Faculty of health sciences
b
Department of health and care sciences
Relational insight and user involvement in the context of Norwegian community mental health care: A narrative analysis of service users' stories. Rita Kristin Klausen A dissertation for the degree of Philosophiae Doctor – August 2016
Faculty of health sciences Department of health and care sciences
Relational insight and user involvement in the context of Norwegian community mental health care: A narrative analysis of service users' stories.
Rita Kristin Klausen A dissertation for the degree of Philosophiae Doctor – August 2016
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The world is made of stories, not atoms.
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Muriel Rukeyser 1
For my birds – Illustration front page: colurbox
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Rukeyser, M. (2015). Brainyquote.com. http://www.brainyquote.com/quotes/quotes/m/murielruke131826.html. Retrieved April 23, 2015
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Acknowledgments First, I express my deepest gratitude to all the study participants, who generously shared their stories. I hope that people in general will use more of their time to speak with mental health service users and listen to their stories. They are worth hearing. I also thank the community mental health centers and their employees for supporting this research. You were more than willing to provide a helping hand with the practical challenges of data collection. I thank the consultant from the mental health user organization for participating in the research and helping me develop the interview guide. I am thankful to Professor Svein Haugsgjerd, who has been my mentor and supervisor during this journey. Your work has changed Norwegian psychiatry, and the love you have for the people you meet and your profession is an ideal for the rest of the world. I am also thankful for the insights and knowledge provided by Marie Karlsson. You have become a close friend. I truly appreciate visiting your house in the woods of Sweden and talking for hours into the night. The leader of this project and supervisor, Professor Geir Fagerjord Lorem, has been an important inspiration and mentor with a thorough understanding of what insight and lack of insight may entail. I also thank Professor Kristin Heggen, who participated in the project design during the early phase. I am further thankful for the UiT/ Arctic University of Norway and the Department of Health and Care Sciences, which took a chance in hiring me. I thank all of my colleagues, and I am grateful for the support from my research group. Thank you to my colleagues at the narrative seminar. Ketil Normann believed in new methods; Bodil Hansen Blix became both a friend and a co-constructionist. Thank you to Torunn Hamran and Anne Serine Fottland, my generous colleagues at the Center for Care Research North. I am grateful for all of my fellow Ph.D. colleagues; the coffees and laughter that we have shared were important, especially during the darker moments of this journey. I also thank my brilliant colleagues at the University of Karlstad, where I spent a semester in 2013. You have taught me a lot about narrative methodology. I am further thankful for the support of my colleagues at the Control Committee at Åsgård Mental Hospital. I extend special thanks to my friend and mentor, Thorbjørg Guttormsen. I further thank my extended family, Rauni Magga Lukkari and Øystein Breming. You read my work and made me believe that I can perform miracles. My lovely friends, you have all been supportive and understanding. Special thanks go to Hilde Mjøs, Kathrine Marjala Jørgensen, Silje Solheim, Bård Andersen, Kirsten Kongsli and the Moi family.
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I thank my parents, Rigmor and Jan Klausen. You believe in me; that is the most wonderful gift a child can receive. My warmest thanks to my beautiful and wise birds: Frid Kjellsdatter Klausen and Ørn Severin Klausen. I am so glad the two of you landed on this planet. Finally, a very special thank you, Svein Henriksen, for meeting me on a dark December night and changing my life. Thank you for giving me a new and extended family, with extraordinary children and lots of love.
Rita K. Klausen Tromsø, August 2016
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Table of Contents English Abstract
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Norwegian Abstract
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List of Articles
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1. Introduction
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1.1 The context of the thesis
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1.2 Changes and continuity in the project
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1.3 My role as a researcher in the field and the project
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1.4 Developing an approach and design
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1.5 A note on language
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1.6 What is not included?
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1.7 Outline of the thesis
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2. Background: the changing social context of mental health care
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2.1 Northern Norwegian mental health services
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2.2 Transitional mental health services
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2.3 Admission to a community mental health center
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3. Theoretical framework
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3.1 The social constructionist approach
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3.2 The relationship between social constructionism and the narrative approach
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3.3 Relevant narrative theory
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3.3.1 Narratives as co- constructions
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3.3.2 Dominant narratives as co- constructions
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3.4 The role of the researcher
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3.5 The interview as a relational context
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3.6 Narrative validity and reflexivity
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4. Literature review – insight and user involvement
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4.1. A service user- oriented literature review
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4.2 Norwegian clinical practice: The problem of insight and patients’ rights
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4.2.1 The clinical intention of discussing insight
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4.3 Theoretical positions from which to consider insight
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4.3.1 Development of decision making models
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4.3.2. Autonomy and coercion
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4.4 Narratives and insight
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4.5 A conceptualization of insight in a social constructionist perspective
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4.6 The relationship between insight and user involvement
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4.7 User involvement in mental health care
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4.7.1 An exploration of the concept of user involvement
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4.7.2 User involvement models
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4.7.3 Reflections related to user involvement
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5. Aims
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6. Methods
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6.1 The three Norwegian community mental health centers
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6.2 Recruitment
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6.3 The participants
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6.4 The interviews
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6.5 The analysis
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6.5.1 An impression of the co- constructed stories
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6.5.2 The selection of stories
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6.5.3 Narrative context analysis; the zoom model
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6.5.4 Thematic analysis; motherhood and mental illness
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6.5.5 Thematic analysis; shared decision making in contexts
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6.6 Ethical mindfulness
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6.7 Narrative as ethics
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6.8 Methodological and ethical reflections through the research process
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6.8.1 Recruitment: constructing the service users
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6.8.2 Constructing the researcher
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6.8.3 Why consider stories in context?
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7. Findings
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7.1 Article 1
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7.2 Article 2
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7.3 Article 3
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8. Discussion
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8.1 Discussion of methods
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8.1.1 Pre-understanding of the study
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8.1.2 User involvement in the research design
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8.1.3 Who owns these stories?
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8.1.4 Doing interviews with service users: Am I giving the service users a voice?
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8.1.5 Can we trust the findings from this study?
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8.2 Discussion of the findings
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8.2.1 Relational insight and decision making processes
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8.2.2 Relational insight and patient rights
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8.2.3 Relational insight and shared decision making
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8.2.4 Mental health service in a holistic perspective, with support systems that focuses on the service users’ personal and social capacities
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8.2.5 Reflections on dominant narratives within the study
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9. Implications for practice and further research: narrative care
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10. Closing remarks
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References
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Paper 1-3 Appendix
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English abstract At the time of this study, Norwegian community mental health services had experienced numerous changes within a deinstitutionalization framework, with more changes planned for the future. The need to emphasize service users’ fundamental change from playing the role of a passive, patient to the role of an actively contributing individual with clearly defined rights and claims became more important. The aim of the study Relational insight and user involvement in the context of Norwegian community mental health care: A narrative analysis of service users' stories was conducted both to investigate service users’ insight into their mental illness and treatment and to support approaches that might be helpful in recognizing and utilizing service users’ perspectives within mental health practice. The research adopted a social constructionist approach with a narrative design. The focus was participants’ narratives concerning both insight and user involvement. The study’s relevance concerned not only how insights can be applied in mental health treatment through dialogue in a narrative environment but also whether this knowledge could facilitate the activation of user involvement. Interviews were conducted with 30 service users from three community mental health centers in Troms and Finnmark. The service users shared stories about their experiences with mental health care. As researchers working on this project, we have gained deeper insights into the service users’ knowledge that both interact and conflict with the changing social context of mental health practice. The three articles in the thesis relate to different dominant narratives within a compound field that moves in numerous directions. The articles ‘attack’ insight and user involvement from various perspectives, and we develop a new understanding of insight as a concept through our analysis of the service users’ narratives as co-constructed stories in context. The narrative approach enables us to explain insight as a relational and dynamic process, not a trait exclusively inherent to the patient. Insight is necessary to implement user involvement in practice. The study suggests that user involvement begins at the admission point, where the professional and the service user are placed in a situation in which the professional is expected to measure the service user’s insight/ lack of insight. If the professional and the service user can participate in co-constructing storytelling practice in an everyday, experience-based language in this situation and throughout treatment, the likelihood of promoting insight will improve. Our findings are not only relevant to mental health services but also transferable to other disciplines in which user involvement is a central topic. 9
Norsk sammendrag I tiden denne studien ble initiert hadde norsk distriktspsykiatri allerede gjennomgått mange endringer innenfor rammene av de- institusjonalisering. Flere endringer var også planlagt for framtiden. Det var et behov for å understreke denne grunnleggende endringen som viktig, også for brukerne. Fra å bli oppfattet som passive pasienter skulle de nå være aktivt, medvirkende individer med klart definerte rettigheter og krav. Målet med studien Relational insight and user involvement in the context of Norwegian community mental health care. A narrative analysis of service users' stories 2 var å undersøke brukernes innsikt i egen helse og behandling, og legge frem mulige tilnærminger som kan være til hjelp for å anerkjenne og nyttiggjøre seg av brukernes perspektiver i praksishverdagen i distriktspsykiatrien. Studien hadde en sosialkonstruksjonistisk tilnærming med et narrativt design. Deltakernes fortellinger om innsikt og brukermedvirkning var i fokus. Studiens relevans var knyttet til hvordan innsikt kan anvendes i behandling, gjennom dialog i et narrativt orientert miljø, og på hvilken måte denne kunnskapen kan legge til rette for en aktivisering av brukermedvirkning. Studien inneholder intervju med 30 brukere fra tre distriktspsykiatriske senter i Troms og Finnmark. Deltakerne delte sine fortellinger om erfaringer fra distriktspsykiatrien, og som forskere i prosjektet, har vi fått en dypere innsikt i brukernes kunnskap, som både samhandler og er i konflikt med de endrende sosiale kontekstene innenfor distriktspsykiatrisk praksis. De tre artiklene i studien omhandler alle dominerende fortellinger innenfor et sammensatt fagfelt som beveger seg i mange retninger. Artiklene ‘angriper’ innsikt og brukermedvirkning fra ulike perspektiver, og vi utvikler en ny forståelse av innsikt som begrep gjennom en analyse av brukernes fortellinger som samkonstruerte fortellinger i kontekst. Gjennom den narrative tilnærmingen får vi tilgang til å forklare innsikt som en relasjonell og dynamisk prosess, og ikke en egenskap som utelukkende bor inne i pasienten. Innsikt er en forutsetning for å kunne implementere brukermedvirkning. Denne studien hevder at brukermedvirkning starter ved første innleggelse. Ved det første møte plasseres behandleren og brukeren i en situasjon hvor behandleren er forventet å måle hvorvidt brukeren har innsikt eller mangler innsikt. Hvis behandleren og brukeren kan delta i en felles narrativ praksis på et hverdagsspråk, i denne situasjonen og gjennom behandlingsforløpet,
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Relasjonell innsikt og brukermedvirkning i norsk distriktspsykiatri. En narrativ analyse av brukeres fortellinger.
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hevder vi at sjansene for å fremme innsikt vil forbedre seg. Våre funn er ikke bare relevante for de psykiatriske helsetjenestene, men er også overførbare til andre disipliner hvor brukermedvirkning er et sentralt tema.
List of articles / liste over artikler: This thesis is based on the following articles: •
Klausen, R. K., Haugsgjerd, S., & Lorem, G. F. (2013). “The Lady in the Coffin”– Delusions and Hearing Voices. A Narrative Performance of Insight. Qualitative Inquiry, 19(6), 431-440.
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Klausen, R. K., Karlsson, M., Haugsgjerd, S., & Lorem, G. F. (2015). Motherhood and mental distress: Personal stories of mothers who have been admitted for mental health treatment. Qualitative Social Work, 1473325015584981.
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Klausen, R.K., Blix, B.H., Karlsson, M., Haugsgjerd, S., & Lorem, G. F. (2016). Shared decision making from the service users’ perspective. A narrative study from community mental health centers in northern Norway. Social Work in Mental Health
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1. Introduction This thesis is one of two studies included in the research project Insight and user involvement: A study of users’ and health professionals’ experiences of treatment and care of severe mental illness 3. This study has the title Relational insight and user involvement in the context of Norwegian community mental health care: A narrative analysis of service users' stories.
1.1 The context of the thesis Our study 4 has a narrative frame and contains narratives of individuals who either have been admitted or receive assistance from northern Norwegian community mental health centers for their mental distress. The narratives are specific to the mental health culture that they construct and are constructed by ‘the stories which our participants tell, and stories which we as researchers hear, are heavily influenced by the norms of the community’ (Andrews, 2007). This study adopts a social perspective on mental health services.
The overall aim of this study was to explore not only service users’ insight into mental illness and mental health treatment but also their experiences of the effect of insight on users’ involvement, their relationships with others and their general life situations.
At the time of this study, Norwegian community mental health services had undergone numerous changes within a deinstitutionalization framework, with more changes planned for the future. The need to emphasize the fundamental change in the service user’s relationship with the therapist from the role of a passive, patient characterized by obedience to authority to the role of an actively contributing individual with clearly defined rights and claims has become important (Ulvestad & Henriksen, 2007) in mental health services. According to Tritter and McCallum (2006, p. 166), ‘[p]rocesses of user involvement seek to transform the culture of healthcare’.
In this thesis, the concepts of user involvement and insight constitute the framework and the participants' narratives are the images within these frames. Both insight and user involvement are seen as crucial elements for discussing a new approach to service users’ active treatment.
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The other study is titled ‘Research-based and user-based knowledge’, and is an ethnographic study by Vår Mathisen at the Arctic University of Norway UiT. Professor Aud Obstfelder at The Arctic University of Norway UiT is the principal supervisor of this project. 4 In this thesis, I use ‘our’ study and ‘we’ when discussing the collaborative research project and analysis. I use ‘I’ when discussing the interviews and the thesis (representing the interviewer and the author of this text).
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The representation of insight as a relational concept with shared decision-making (Storm & Davidson, 2010) can lead to an understanding of insight as a cornerstone in mental health practice. Insight is ‘a multidimensional construct’ (Cavelti, Kvrgic, Beck, Rüsch, & Vauth, 2012, p. 468) and closely associated with user involvement within mental health services (Roe, 2001). Insight ‘turns out to be a major challenge especially in every day clinical practice’ (Schennach et al., 2012, p. 626), and there has been a proliferation of research concerning insight (Arango & Amador, 2011). Individuals in need of mental health treatment state a desire for an increased influence in and responsibility for their life situation (Hem, 2008). Insight in an individual’s own treatment and health is necessary to implement user involvement in practice (Quee et al., 2010). Thus, insight can affect the core clinical and value-related issues related to user-oriented treatment, autonomy, adherence and consultation. According to Ampalam, Deepthi and Vadaparty (2012, p. 46), insight represents an individual response to diagnosis; thus, insight depends on the meanings that individuals attach to their illnesses.
The new and active user role, as defined in the new policy guidelines (Ministry of Health and Care Services, 2009) concerning user involvement, requires new definitions of insight. User involvement and insight are core concepts of mental health treatment and occur together because if one falls away, the justification for the other follows. The concepts are woven together as in a Möbius strip 5. Evidence indicates that the intention to implement user involvement in Norwegian mental health services is based on rhetoric rather than reality (Gudde et al., 2013).
Service users’ narratives make important contributions that offer a broader picture of the compound that underlies both insight and user involvement within mental health services. Using narratives as points of departure, we investigate how the multiple storied experiences connected to service users’ insight and treatment can contribute to the experience-oriented knowledge necessary to develop user involvement.
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A Möbius strip is a continuous surface with only one side and is typically constructed by connecting the two ends of a rectangular strip of paper after making a half-twist (180 degrees relative to the opposite side) in the strip (http://www.physlink.com/Education/AskExperts/ae401.cfm).
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1.2 Changes and continuity in the project Both the conceptual framework of our project (insight and user involvement) and the participants’ narratives are characterized by the surrounding changes and continuity within mental health services. The project transformed over the course of the study; the data’s meaning changed over time as we became aware of new and changing aspects of the empirical field of mental health services. Naturally, this transformation affected the research process. In other words, preparing this thesis has involved a journey of change and continuity.
This study employed a narrative approach from the beginning. After closely studying the method, we decided to focus on narratives as co-constructions in context (Peterson & Langellier, 2006; Zilber, Tuval-Mashiach, & Lieblich, 2008). This methodological approach allows the researcher to explore a changing and multifarious social process as represented by our empirical field. The service user’s narratives can be described as ‘embedded’ in the surrounding discourses (Ochs & Capps, 2001, p. 37).
The project's inherently dynamic nature is fundamental to understanding the study in its entirety. Denzin and Lincoln (2013) use the metaphor of bricolage (quilt making or montage) to describe the dynamic nature of a qualitative study; it can highlight interpretive, narrative and theoretical bricoleurs. These representations are fitted into a diversified context in which ‘different tools, methods, and techniques of representation and interpretation are added to the puzzle’ (Denzin & Lincoln, 2013, pp. 7-8). In this study, the process has been guided by our narrative approach.
This study views the concepts of insight and user involvement as fluid and requiring detailed review. This requirement applies particularly to the concept of insight. By thoroughly examining insight, we want to show that the practical consequences of a new development of this term will have consequences for how user involvement is exercised in mental health services. 1.3 My role as a researcher in the field and the project The roots of my thesis can be traced to experiences in both my personal and professional life. Consistent with Richardson (1997), I am present in the text. My oldest brother died under dramatic circumstances in January 2006. He had been in occasional contact with mental health services throughout his life; those meetings were never easy for any of us, his family 14
members. I believe that the idea of being a ‘mental health patient’ scared him away from life. This event planted within me both a fervent commitment to and a deep interest in the multifaceted and extensive field of mental health services. I had worked as a family and network therapist at child welfare institutions for years prior to his death and had been concerned with child and adolescent mental health from a network perspective. It became clear to me that I wished to focus on user involvement in mental health services in my work. In the years following his death, I worked in service user-driven rehabilitation. In 2009, I completed my master's degree at the University of Nordland and focused on siblings as next of kin within mental health treatment. I employed autobiography and memory work as a theoretical approach 6. I became involved in volunteer work related to substance abuse and mental health in my hometown and became increasingly concerned about the implications for an individual (and her/his family) upon being defined as mentally ill or in need of mental health services. How can these stories be told and heard?
According to Ochs and Capps (2001, p. 4-5), coherent linear narratives typically have the following characteristics:
‘…a plot structure that depicts a sequence of temporally and causally ordered events organized around a point, with a beginning that situates a significant, i.e., unexpected and hence tellable, incident and moves logically towards an ending that provides a sense of psychological closure’.
These types of narratives employ various techniques such as foreshadowing and backshadowing, and life is therefore ‘treated like [it is] structured, ordered and goal-directed’ (Ochs & Capps, 2001, p. 5). However, life and life events are seldom simple and structured. They can be ambiguous, conflictual, unstable and subject to constant revision (ibid.). In a dynamic story, the technique of sideshadowing can be used to express the ever-changing nature of human life and events. Sideshadowing is defined as a technique in which the past is transformed into the present and captures ‘the polyphonic and indeterminate quality of human events and non-events’ (Ochs & Capps, 2001, p. 6). My belief is that our lives and life events are polyphonic in nature; in this context, I believe that my approach to this thesis can be defined as a sideshadowed path. Many narratives have led me to where I am today. These 6
I employed the theory advanced by Widerberg in her book Kunnskapens kjønn. Minner, refleksjoner og teori [The gender of knowledge. Memories, reflections and theory], Pax Forlag 1995.
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narratives include not only my own personal and professional lives but also, and most importantly, the narratives of the study participants who needed help from mental health services. These individuals experience a daily struggle with their complicated and unpredictable lives. We interacted over the course of this project, and narratives were created. These co-constructed narratives constitute the foundation of this work. Moreover, I must emphasize that in line with Stenhouse (2009, p. 2), this thesis ‘is my narrative of the research’.
1.4 Developing an approach and design The study is a qualitative study with a narrative approach utilizing a co-constructive design. This design allows the researcher to develop stories in cooperation with the participants that focus ‘not just on how stories are structured and the ways in which they work but also on who produces them and by what means; the mechanisms by which they are consumed; and how narratives are silenced, contested or accepted’(Andrews, Squire, & Tamboukou, 2008). In line with Riessman (1993, p. 1), we have focused on narrative analysis that ‘takes as its object of investigation the story itself’. The purpose is also to see how the interviewees describe their experiences, not simply the content of their stories. Like many narrative researchers, we understand stories as ‘interactions between storyteller and listener(s), researcher and research participant’ (Squire, 2008).
Although the initial purposes of qualitative research can be explicitly stated, the outcomes cannot be specified in advance (Josselson, 2007). We adopted a social constructionist perspective, focusing on the participants’ stories as co-constructions in context. Frank stresses that narrative research 'requires hearing participants' stories not as surrogate observations of their lives outside the interview but as acts of engagements with researchers' (Frank, 2005, p. 968).
We explore questions concerning insight and user involvement among service users in community mental health centers in Northern Norway. A narrative context-oriented approach allows us to investigate the service users’ understanding of their own mental illness and treatment. By departing from co-constructed narratives, we emphasize insight as a relational and dynamic process and the service users’ experience-oriented knowledge as vital for further developing user involvement in practice.
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When considering insight from within a social constructionist perspective, it is important to acknowledge that insight is created out of the relations and contexts of everybody involved. Insight is not exclusively inherent to the service user. This acknowledgement closely ties insight as a process to user involvement. In this thesis, the perspective of insight has been adjusted to address the practical challenges linked to everyday mental health treatment instead of clinical assessments made by professionals. We see insight as characteristic of a relational and dynamic process; it is not limited to decision-making competence. What are the consequences of emphasizing that insight is a relational concept for how user involvement can be practiced in mental health services?
Almost all the study’s participants were admitted or receiving outpatient care organized by their local community mental health centers. One participant claimed that she was healthy and no longer suffering from mental illness 7. Except for that woman, all the participants were dependent on the mental health services and treatment provided by their community mental health centers. In relation to treatment and experiences of treatment, insight and user involvement are crucial concepts. Insight is necessary to implement user involvement in practice (Quee et al., 2010). When admitted to mental health treatment, the professionals consider whether the service user has insight, a decision that has major consequences for service users’ ability to be involved in their treatment. If a person lacks insight, it will be difficult for him or her to make adequate decisions about health and treatment.
This thesis contributes to the field of mental health services by investigating the concept of insight and user involvement, with a particular focus on insight and its practical consequences for the individual service users and her/his possibilities for being involved in treatment. We develop a new understanding of insight as a concept by analyzing the service users’ narratives as co-constructed stories in context. The narrative approach allows us to understand insight as a relational, dynamic process.
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Before beginning to gather the empirical data, I thought that most of the service users would have insight and would be very interested in discussing user involvement. I will address this initial understanding in the discussion chapter.
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1.5 A note on language Mental health services represent a diverse research area with numerous different disciplines and directions therein. One of the many controversial topics in the field has been the issue of which terminology to employ when referring to the recipients of mental health services. Definitions of the recipients may be important with respect to how the individuals understand themselves in interactions with the support system; new concepts can help them think across inherited traditions, cultures and practices (Ulvestad & Henriksen, 2007). The terms used to describe service users can be either stigmatizing or empowering (Dickens & Picchioni, 2012). Research concerning this topic has concluded that a diversity of terms is used and that there is a need to respect individual preferences (Dickens & Picchioni, 2012; Simmons, Hawley, Gale, & Sivakumaran, 2010). Both while conducting interviews and while working with the data, this study has focused on using an experience-oriented language that does not always involve medical terminology. This approach is reflected in the articles. Below, I present four primary types of terminology that this thesis uses in various ways.
Mental illness and diagnoses are not simple topics and as concepts, they primarily refer to the 10th revision of the International Classification of Diseases by the World Health Organization (ICD-10) 8. The ICD-10 contains a detailed classification of more than 300 mental and behavioral disorders (chapter V:ICD-10).The aim of psychiatric classification is to create order amid the diversity of psychiatric symptoms, syndromes and behavioral problems encountered in clinical practice (Malt, Retterstøl, & Dahl, 2003). The Diagnostic and Statistical Manual of Mental Disorders (DSM) (American Psychiatric Association, 1994) is the official set of diagnostic criteria for mental disorders in the United States; in Norway, the DSM is used as a supplement to the ICD (Dahl & Aarre, 2012a). According to Dahl and Aarre (ibid.), the purposes of the classification system in the clinical context are communication, control and understanding. Classification can be considered a necessity in cases of communication within health care, research and the community (especially concerning social security services). Classifications and diagnoses are important aspects of the context of community mental health centers, and service users relate to their diagnoses in various ways. All study participants indicated that the disease had made serious changes in their lives. However, the focus of this thesis is the service users’ stories and how they experience mental health services. Although the ICD-10 is part of the terminology of mental health services, this 8
http://www.kith.no/upload/1816/Komplettt-Bl%C3%A5-bok_230905.pdf. Online edition of the ICD-10 in Norwegian.
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study employs the terms used or referred to by the study’s participants. Thus, the terms mental illness and diagnoses vary throughout the thesis. I prefer to use the term ‘mental illness’, which I consider to have a broader definition than, for instance, ‘severe mental illness’. From a service user’s perspective (not from a medical perspective), I think that everybody experiences his or her mental illness as either more or less severe. Although some might find the term ‘mental illness’ to be stigmatizing, I have chosen to use it 9.
Definitions of the participants may be a topic for discussion. The specific terms preferred by recipients of mental health services are unpredictable (Simmons et al., 2010). In this thesis, several terms are used: patients, service users, participants and interviewees. According to Dickens and Picchioni (2012, p. 116), the discourse surrounding the various terms is not settled; a diversity of strong opinions is expressed about the terms that are employed. When writing the thesis, I used the term ‘service user’ because I find that this term reflects not only the context in which these individuals are placed but also the fact that these individuals are users of mental health services. Although service user organizations in Norway generally use the term ‘user’ (cf www.erfaringskompetanse.no), I find the term ‘service user’ to be more informative and clear in relation to the mental health community context in which we are moving.
The terms ‘community mental health center’ and ‘district psychiatric center’ describe the same services, at least in Norway. However, the Norwegian mental health service employs a different terminology than its English and American counterparts to describe public services within mental health. District psychiatric centers are decentralized, specialized services that are termed community psychiatry in the international literature. Norway’s district psychiatric centers are community mental health centers adapted to Norwegian conditions (Ministry of Health and Care Services, 2006). The term ‘community mental health centers’ is used throughout this thesis.
User participation and involvement are used interchangeably in this thesis. Although these concepts have become common in the vocabulary of mental health, they cover a wide range of activities (Peck, Gulliver, & Towel, 2002). These concepts can describe everything from a
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Aneshensel et al. provide a broad definition of mental illness that is related to thoughts, emotions and actions that are experienced ‘across diverse cultures, social structures, physical environments, and historical epochs’ (2013, p.4) and is related to an objective reality.
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situation of no involvement by the service users to a situation of full partnership in which service users and professionals collaborate regarding decisions about individual treatment (Towle et al., 2010). Consistent with Tritter and McCallum (2006), we understand these concepts as multifaceted and communicating meanings and actions in individual and societal decision-making processes. User involvement requires dynamic structures and processes that are recognized by both participants and non-participants (ibid.). 1.6 What is not included? The interviews in the thesis capture many themes. I briefly mention four themes that could have been of particular interest to investigate, but for which there is no room. The first theme is that of the cultural perspective. Three refugees among the study participants had their asylum applications rejected. At the time of the interviews, they had been admitted to a community mental health center in an unfamiliar treatment context in the face of an uncertain future. However, I have chosen not to use the material from these interviews because of the study’s limitations. The participants also included one Russian woman who had lived in Norway for many years, along with Sami participants. These participants were better acquainted with the Norwegian treatment culture than the refugees were, but it could still be interesting, in another context, to look at the wider cultural perspective 10. This task could be accomplished in a follow-up study.
The second theme is the new health reform: the coordination reform and service users’ understanding of the processes to which the reform might lead. It could have been particularly interesting to look at reform in connection with the treatment received by the service users in the community mental health centers 11. At the time of the interviews, there were many political protests in communities in Northern Norway linked to cutbacks in the community mental health centers and a greater focus at the central level on municipal mental health services. All study participants lived in Northern Norwegian districts. Accordingly, their stories about the new reform provide perspectives from relatively rural areas. Because of this study’s limitations, it has not been possible to treat this topic.
10
I also understand ethnicity /ethnic identity as a part of a cultural perspective. The reform represents a backdrop for another article by Klausen, Karlsson, Haugsgjerd and Lorem (forthcoming) but is not included in this thesis. 11
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The third omitted theme embraces a more methodical perspective and relates to the possibility of choosing a narrative content analysis for all the conducted interviews. Choosing stories for focused attention is a crucial task within narrative research (Blix, 2013). By choosing 20 stories 12 for analysis, I based my attention on a ‘practical wisdom gained through analytical experience’ (Frank, 2012). The 20 stories were chosen because they give an impression of how insight is articulated through storytelling, which can have implications for mental health practice that considers user involvement. They also represent diversity with respect to how dominant narratives are understood, continued or discontinued by service users in community mental health centers at a given time in a given context (Blix, 2013). It is a privilege to have access to the comprehensive and exciting material included in these interviews. Nevertheless, it is important to note that five of the 30 interviews (two interviews that I chose to end, along with the interviews of three refugees) were neither transcribed nor included in the analysis 13.
The fourth and last theme that is not included in the thesis is the different treatment contexts in the three community mental health centers. It would have been interesting to investigate any similarities and differences among the various service users’ diverse experiences at the three centers. Unfortunately, this topic did not fall within the frames of the investigation connected to insight and user involvement during this round.
There are many possibilities and choices within the stories. Thus, the challenge is to adhere to the study objectives and research issues. In this instance, insight and user involvement is the focus. My argument is obviously influenced by my understanding of the concepts, which are located in a social constructionist perspective that emphasizes interaction with the participants in the study.
1.7 Outline of the thesis This thesis is organized into 10 chapters: •
Chapter 2 provides the background of the project. I describe contemporary Northern Norwegian mental health services. Transitional mental health service is discussed. I give some thoughts about the practical aspects of an individual service user’s admission to a community mental health center to provide an understanding of what meets the individual service user when she/he is admitted.
12 13
These 20 stories are excerpted from 16 interviews. This will be further explained in chapter 6.
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•
Chapter 3 outlines the theoretical framework of the social constructionist approach selected, including the relationship between social constructionism and the narrative approach. Relevant narrative theory is presented. An important focus of the narrative approach in this thesis is that of narratives as co-constructions. I discuss dominant narratives as co-constructions. The researcher’s role is presented and the interview is defined as a relational context. Finally, in this chapter I discuss narrative validity and reflexivity.
•
Chapter 4 presents the literature review regarding insight and user involvement. I focus on a service user-oriented literature review and describe Norwegian clinical practice. I discuss the problem of insight and patient rights before investigating the clinical intention of discussing insight. I describe some theoretical positions from which to consider insight before underlining some relevant concepts central to the performance of insight. I look at narratives and insight before giving some thoughts connected to a conceptualization of insight in a social constructionist approach. The relationship between insight and user involvement is presented. In section 4.7, I briefly introduce user involvement in mental health care, followed by an exploration of the concept. I also present some user involvement models. Finally, I reflect on user involvement models.
•
Chapter 5 presents the aims of the study. I also present the aims within each of the three articles upon which this thesis is based.
•
Chapter 6 focuses on the project’s methods and presents the three community mental health centers, the recruitment and the participants. The interview process is described. I present the analysis and give an impression of the co-constructed stories. I describe the selection of stories. Narrative context analysis is presented, followed by thematic analysis. I present the attention devoted to ethical mindfulness and narrative as ethics. Further, I focus on methodological and ethical reflections through the research process. I discuss the constructing of the service users and the researcher, before I ask why we should consider stories in context.
•
Chapter 7 presents the findings of the study.
•
Chapter 8 contains a discussion of methods and findings. First, I present my preunderstanding of the study. I examine user involvement in the research design. I present some thoughts on who own the stories in the study before reflecting on whether I am giving vulnerable service users a voice. I raise the question whether we 22
can trust the findings in the study. I discuss the study’s findings. I reflect on the potential theoretical consequences of relational insight for the practice field. I focus on decision-making processes, patient rights and shared decision making. I look at mental health services as in need of a more holistic perspective, with support systems that focuses on the service users’ personal and social capacities. I reflect on the dominant narratives within our study and how they were challenged. •
Chapter 9 presents implications for practice and further research, with a focus on narrative care.
•
Chapter 10 provides closing remarks.
2. Background: the changing social context of mental health care The study background includes an introduction to the field of mental health services in the local treatment context and what service users encounter when they are admitted to community mental health centers in Northern Norway. The interviews in the study were performed within this contextual frame. When the service users in our study told their stories, the meaning-making process was related to a series of social interactions with other individuals (Langellier, 2001) and their surrounding contexts. The mental health services and the community mental health centers were central backdrops for storytelling by individual service users. By introducing mental health services in Northern Norway and its transformations and changes, we provide insight into what meets the individual service user when she/he is admitted. I also present some considerations concerning transitional mental health services. Finally, I give some thoughts about the practicalities of admission to community mental health centers for individual service users.
2.1 Northern Norwegian mental health services Psychiatric treatment cannot be isolated from the context in which it occurs in, i.e. the social reality we live in with the factors that affect mental health or mental illness (Haugsgjerd, 1990a, p. 399).
Mental health services in Norway have transitioned away from institutions and toward the community (Larsen, 2009). The country’s mental health services have experienced numerous reform processes that have been implemented in various stages (transforming from large psychiatric institutions toward more individually adapted services). Health reforms were implemented during the 1970s and several service users received treatment in community 23
mental health centers located closer to their homes. During the past 10 to 15 years, there has been a significant restructuring, moving toward more decentralized mental health services throughout the country (Pedersen, Sitter, Lilleeng, & Gravbrøt, 2013). Major changes involving new therapies, care settings, renewed legal frames, internal and institutional organization and the development of new research areas have become a reality (ibid.). We encounter diverse mental health services that reflect both the new demands of modern societies and how such societies address mental illness (Novella, 2008).
The term ‘deinstitutionalization’ refers to ‘a complex and comprehensive transformation of mental health care service in a range of national contexts’ (Joseph & Kearns, 1996, p. 179). The aim of deinstitutionalization is to achieve an ideal of freedom (away from the old, large institutions) and more active, social participation by service users (Lorem, 2006). The purpose is to ensure that a service user is as independent and self-reliant as possible (ibid.). Treatment is regarded as an ongoing social process with the goal of an improved quality of life for service users in their communities. Deinstitutionalization is understood as more than changing the locus of care (Lamb & Bachrach, 2001). According to Lamb and Bachrach (2001), service planning must be tailored to the needs of individual service users. Hospital care must be available for individuals who require it. Mental health services must be culturally relevant and service users must be involved in their service plans. Service systems must not be delimited by a predetermined ideology, and there must be continuity of care (ibid.). Mental health care is a diverse field that encompasses numerous areas of knowledge and practice (Haugsgjerd, Jensen, Karlsson, & Løkke, 2009). It is also a dynamic field, and the evolution of user involvement as a dynamic and process-oriented concept requires a new understanding of the concept of insight 14.
Specialized mental health services are now delivered closer to where recipients live (Bruun & Svendsen, 2011). According to the Region of Health North (Helse Nord 2005), 15 greater proximity and increased capacity and availability have offered more individuals the opportunity to receive treatment in their region. The Escalation Plan for Mental Health stimulated an increase in local treatment and the decentralization of specialist treatment (Ministry of Health and Care Services, 1997-98). Mental health services for adults in Norway consist of community mental health centers, specialized hospital departments and private 14 15
The concept of insight will be further and carefully discussed in chapter 4. Norway is divided into five health regions.
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practice psychologists and psychiatrists operating upon agreement (Dahl & Aarre, 2012b). In addition, mental health services are managed at the municipal level. The most important components of mental health care should be delivered at a community level, and the provision of hospital care should be limited. A modern mental health service balances community- and hospital-based care (Thornicroft & Tansella, 2009). Community-based mental health services are designed to provide specialized, easily accessible, and coordinated inpatient and outpatient mental health services (Ministry of Health and Care Services, 1997). Community mental health centers are responsible for coordinating the majority of public services for adult mental health and possess the skills to assess and treat individuals who have the most common mental illness (Helse Nord, 2005). The centers are part of the specialized services in mental health care for adults outside the central psychiatric hospitals; however, both professionally and organizationally, they belong to the same regional health authorities (Haugsgjerd et al., 2009). Norway’s community mental health centers are specialized and independent units that are ‘responsible for general mental health services to the population within a specific geographic area’ (Storm, Hausken, & Knudsen, 2011, p. 2). Ideally, each community mental health center should have an outpatient clinic, a mobile team, and one or more inpatient departments 16. Community mental health centers are also responsible for assisting community health services by providing advice and guidance and ensuring the continuity of specialized mental health services (Pedersen et al., 2013). The centers should also be low-threshold services that provide emergency care intended to prevent hospital admissions. The national health plans emphasize that specialist health and community health services have a shared responsibility. Through new knowledge regarding prevention and health promotion measures, specialized health services will be transformed from passively accepting service users for treatment to actively preventing illness (Helse Nord, 2005, p. 8).
Report No. 25 to the Storting "Transparency and comprehensiveness. About Mental Illness and Mental Health Services" (Ministry of Health and Care Services, 1997) concludes that service users did not receive the help they required, staff felt that they had not performed their duties satisfactorily, and the government failed to provide the population with adequate treatment options. The Escalation Plan for Mental Health (Ministry of Health and Care Services, 1997-98) emphasizes the need to strengthen each link in the chain to develop a comprehensive and coherent treatment network. In Health Region North, this approach
16
Ministry of Health and Care Services, 1997.
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involved increasing adult psychiatry within both outpatient and inpatient services and expanding the number of beds at psychiatric hospitals. According to the action plan for mental health (Helse Nord, 2005), at the time that report was written there remained a lack of capacity, quality, organization, participation, interaction and accessibility of mental health services in Northern Norway.
Community mental health centers in Northern Norway cover large areas of the region. Currently, there are 14 community mental health centers in Northern Norway covering 87 municipalities (Gammersvik, 2009). However, Northern Norway’s community mental health centers vary substantially with respect to their organization, professional services, specialist coverage, professionalism and quality, use of resources, cooperation with local authorities and design (Sletnes, Hansen, Winther, & Magnussen, 2008; Vorland, 2009). There are variations among the centers regarding ‘the service content to be provided, available resources and provider’s competence’ (Storm et al., 2011, p. 2). In 2005, Health Region North reported not only that the two largest towns in Northern Norway, Bodø and Tromsø, have insufficient acute psychiatric capacity at their psychiatric hospitals but also that the community mental health centers lack sufficient specialized expertise to provide instant assistance at all hours. In psychiatric hospitals, these deficits cause overcrowding in acute wards and increased pressure on general wards (Helse Nord, 2005, p. 16). According to Gammersvik, (2009), Northern Norway experiences challenges concerning service user involvement and policies /procedures in psychiatric hospitals regarding service user flow; furthermore, many community mental health centers do not sufficiently cooperate with the relevant municipalities.
2.2 Transitional mental health services ‘The treatment context is central, and the human experience of the treatment context is important’ (Haugsgjerd, 1990b, p. 387).
Norway’s mental health services are changing. Consistent with Joseph and Kearns, we agree that ‘both deinstitutionalization and restructuring are complex processes with distinct attributes that manifest themselves at the national, regional and local scales’ (1996, p. 182). A community-based mental health care system can be understood as more multifaceted than its psychiatric hospital predecessors and generates uncertainty regarding future services and treatment (Thornicraft & Tansella, 2009). Norway’s Coordination Reform is a step towards
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greater autonomy for the individual service user. Moreover, there is also a clear goal of reducing the costs of Norway’s health-care system 17.
Instead of a linear process, the changes in mental health services and the restructuring of the care system can be described as cycles of care that often pass through four stages: optimism (the community mental health approach), building (decentralized community mental health centers and smaller residential and day-care facilities), disillusionment (scandals, inquires and public reaction) and control (the attempt to differentiate between ‘safe’ and ‘risky’ patients) (Thornicraft & Tansella, 2009, pp. 26-28). These cycles of care present different approaches to mental health care services from the service users’ perspective. Mental health services are experiencing an ongoing, dynamic process that is subject to substantial guidance from central authorities but is implemented through local expressions within the individual community mental health centers and municipalities. Community mental health care should prioritize ‘accessibility, comprehensiveness, continuity and co-ordination’ (Thornicraft & Tansella, 2009, p. 33), and the level of user involvement should increase at all levels of mental health services.
Despite Norway’s focus since the 1980s on user involvement in mental health, little is known regarding the degree to which user-oriented mental health services have been established (Storm et al., 2011). Instead, we have knowledge related to the lack of user involvement (Lorem, Hem, & Molewijk, 2014; Lorem, Steffensen, Frafjord, & Wang, 2014). The changes within mental health services have effected changes in the role of the service user (Lammers & Happell, 2003). When transitioning mental health services toward more community-based services, service users’ power is more embedded in day-to-day care delivery, in contrast to the situation in psychiatric hospitals. One important characteristic of user-oriented services is that service users are encouraged to actively participate in decisions about their treatment. The right to participate is anchored in legislation and service users and professionals should engage in greater cooperation to clarify choices so the best option for the individual can be chosen (Ministry of Health and Care Services, 2009). This factor does not always indicate that opportunities for user involvement are improved.
17
http://www.regjeringen.no/nb/dep/hod/tema/samhandlingsreformen/omsamhandlingsreformen/samhandlingsreformen-i-kortversjon.html?id=650137.
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According to Saraceno (2009), service users should be partners in care. Moreover, their family members should be involved. Thus, the community service will become a more dynamic, interactive setting in which ethics, experience and science are mutually reinforcing. Deinstitutionalization is an ongoing process of social change and represents an overarching trend in mental health services. These changes substantially influence the lives of the service users, ‘who constitute a diverse and heterogeneous group’ (Lamb & Bachrach, 2001, p. 1043) in need of individualized care.
2.3 Admission to a community mental health center Service users have different needs and pathways (Ministry of Health and Care Services, 2006). For some service users the need for assistance emerges from a crisis, whereas for others, long-term thinking and planning over time has a greater influence. Many individuals who require mental health services need assistance from several levels of the mental health system. For many service users, the primary approach is to contact their general practitioner (GP), who will consider whether municipal mental health services /outpatient services could be useful. If not, the GP will refer the individual to either an acute psychiatric ward at the hospital (depending on the severity of the situation) or to various programs within community mental health centers.
Upon admission to specialist care, the service user will be re-examined by a specialist who makes decisions about the measures to be implemented. In an unclear situation or when the professionals are unsure of the diagnosis, the service user is often admitted to the psychiatric hospital for observation. Examples of admission criteria for inpatient care at community mental health centers include early intervention /preventing psychosis, preventing suicide, preventing acute crises from developing into long-term problems, and treating extensive deficits in everyday functioning (Ministry of Health and Care Services, 2006). The goal is to collaborate with the service user on admission to ensure that the intervention can be initiated at the lowest possible level of mental health services (ibid.). If the service user is admitted to a community mental health center, it is also important for the community mental health center to establish collaboration with the service user’s home municipality.
Service users are diagnosed in accordance with the guidelines in the diagnostic system ICD10 (ICD-10). The ICD-10 is based on three professional purposes: communication, which indicates the need for appropriate professional communication; control, which indicates 28
identifying preventive measures, providing effective treatment and limiting complications; and finally, understanding with respect to research and clinical work (Dahl & Aarre, 2012b, pp. 25-26). In Norway, the Statistical Manual of Mental Disorders (DSM) is used as a supplement to the international classification system ICD-10 18. These diagnostic manuals are usually perceived as guidelines to help the professionals assess and classify a service user’s mental illness. Diagnosis is not always easy to determine; it can be a process to arrive at a category that is consistent with the individual's mental distress.
Treatment can begin when the service user is admitted to a community mental health center. The field of mental health care features various treatment cultures. Service users experience different treatment cultures within the system. These cultures exist in ‘a continuum where monologue and dialogic cultures represent endpoints’ (Kogstad, Hummelvoll, & Eriksson, 2009). It is central to acknowledge the contrasting service that users receive in different treatment cultures (ibid.) and give individual users a choice that enables the receipt of their preferred treatment.
Upon admission, the clinician must assess whether the individual has insight into her/his own health and treatment. From a medical perspective, insight is predominantly understood as exclusively inherent in the service user. Although the concepts of insight and user involvement are further discussed in chapter 4, it is important to mention here that insight is understood as a core concept within mental health treatment that determines whether a service user is capable of participating in and making decisions about her/his treatment.
3. Theoretical framework In the next chapter, I provide an account of the theoretical framework of this thesis. This framework constitutes the basis for studying the diverse and ever-changing social processes of mental health care. I first present the social constructionist approach. I examine the relationship between social constructionism and the narrative approach. I present relevant narrative theory. The chosen narrative perspective is that of narratives as co-constructions in context. I discuss dominant narratives as co-constructions. Furthermore, I provide a brief overview of the researcher’s role. I also present the interview context as a relational context. Finally, I offer some considerations about narrative validity and reflexivity.
18
In section 3.2, I examine how the DSM can be understood as a narrative source.
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3.1 The social constructionist approach The social constructionist approach is an interdisciplinary research position adopted by many historians, anthropologists and sociologists (Khalifa, 2010), along with psychologists (Burr, 2003) 19. This approach is primarily concerned with the processes ‘by which people come to describe, explain, or otherwise account for the world (including themselves) in which they live’ (Gergen, 1985, p. 266). According to Burr (2003), although this approach contains an array of features, one common key assumption is the adoption of a critical stance towards a taken-for-granted understanding of the world. Social constructionists do not deny the existence of an objective reality—instead, they maintain that the meaning of reality is socially constructed (Andrews, 2012). Concepts are constructed instead of discovered; moreover, they correspond to something real in the world (ibid.). Society is both a subjective and an objective reality in the world; ‘the former is brought about through the interaction of people with the social world, with this social world in turn influencing people resulting in routinization and habitualization’ (Andrews, 2012, p. 40). Habitualization gradually becomes a general store of knowledge (dominant narratives), and this knowledge is ‘institutionalized by society to the extent that future generations experience this type of knowledge as objective’ (ibid.).
What principally constitutes both our relationships and ourselves is the social reproduction and transformation of structures of meaning, conventions, morals and discursive practices (Cromby & Nightingale, 1999). Reality is constructed ‘in language systems in which we exist’ (Whiting, 2007, p. 141), and several social constructionists are concerned with the performative role of language (Burr, 2003). Social constructionists understand language as having practical consequences for people (ibid.). If, for instance, we understand insight as a constructed concept belonging to a particular culture and time, we can understand some of the consequences of insight /lack of insight. Social practices and interactions are especially interesting within social constructionism. Instead of pathologizing the service user’s lack of insight as an inner defect, the social constructionist approach focuses on how insight as a construction emerges through the interactions between the service users and all the people involved in the process (Burr, 2003). Accordingly, there is a focus on processes above
19
Young and Colin (2004) distinguish between constructivism as a more individually oriented approach (which is occupied with meaning-making and construction of the world through individual processes) and constructionism, which has a focus on the construction of social and psychological worlds through social processes and interaction.
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structures that naturally considers knowledge as something that people create together. How we understand the world is both historically and culturally specific. The social practices in which individuals are engaged and the interactions in which they participate are of great interest. When considering insight and user involvement, this leads us to a focus on the interaction in which these concepts are being discussed or told. Within our study frame, this interaction occurs within the interview context, the research interview, which is considered a transferable image to the therapeutic setting between the service user and the clinician in mental health treatment.
Are the interviews in the study transferable as constructions of knowledge when we discuss insight and user involvement? Can they tell us something about what a good clinical practice within mental health services can be? Both insight and user involvement are founded within communities of meaning-making, and I find it important to question the taken-for-granted medical knowledge concerning insight. Is insight exclusively inherent in the service user? Is insight measurable? Are there gold standards for measurements? From a social constructionist approach, it is important to ask new questions, ‘often evaluative, political and pragmatic’ (Young & Collin, 2004, p. 377) questions, about the choices being made. ‘Meaning is constructed in a social, historical and cultural context, through action and discourse in which we form relationships and community’ (Young & Collin, 2004, p. 378). We can see insight as a constructed concept, within historical and cultural contexts, that needs to be challenged as a discourse or ‘a way of thinking’. Scientific knowledge is generated through relationships and reflective inquiry (Blustein, Schultheiss, & Flum, 2004) within the social constructionist approach. The researcher is seen as being ‘closer’ to the participants and the knowledge created is a product of the social interaction between the researcher and the participants (Blustein et al., 2004; Burr, 2003). Relational processes and language are important features of social construction (Blustein et al., 2004). From a Bakhtinian perspective on social constructionism, knowledge emerges from the interaction of voices in dialogism (Yüksel, 2009). Bakhtin understood language as ‘a living, socio-ideological thing’ (Bakhtin, Wright, & Holquist, 1981, p. 293); for the individual, conscious language ‘lies on the borderline between oneself and the other’ (ibid.). In my view, the relational approach that lies within the social constructionist approach can form the basis for a richer contextualized view of insight and user involvement that can lead to a mental health practice in which new questions can be asked. Insight as a concept is constructed both in constructions of ‘insight’ that are attributed to professionals and in terms of service users’ self-constructions (Malson, Finn, Treasure, 31
Clarke, & Anderson, 2004). This thesis seeks to adopt a new, social constructionist perspective on insight as a co-constructed, dynamic process.
3.2 The relationship between social constructionism and the narrative approach I present the relationship between social constructionism and the narrative approach by taking a closer look at Tekin’s ‘Self concept through the diagnostic looking glass: Narratives and mental disorder’ (2011). The paper is highlighted in this context to give the reader an example of how social constructionism can affect narratives and how narratives can affect social constructionism. In that paper, Tekin discusses the Diagnostic Statistical Manual of Mental Disorders (DSM) as a source of narrative ‘affecting the diagnosed subjects’ self-conceptions and possibilities for self-development’ (2011, p. 358). Tekin defines narratives as playing ‘a crucial role in understanding ourselves and others, as well as establishing a self-concept’ (2011, p. 360). Narratives are sense-making tools (ibid.) and organize our lives, put experiences into context, and enable us to make sense of the events in our lives. The DSM functions not only as a tool for clinicians to determine and communicate diagnosis and develop methods for treatment but also as a guide for service users to make sense of their mental illness. Obtaining a DSM diagnosis can systematize a service users’ experience with mental illness, explaining difficult feelings and thoughts. Simultaneously, it can affect a service user’s autobiographical and social narrative (Tekin, 2011). Tekin further uses the concept of ‘looping effects’ (2011, p. 367) to explain the many social interactions that take place in relation to the DSM as a source of narrative:
The parameters in the “looping effects” schema include the following:
‘.... (1) institutions,(2) knowledge, (3) experts, (4) classification, and (5) classified people. The interaction between these elements leads to looping: the experts in human sciences, who work within certain institutions that guarantee their legitimacy, authenticity, and status as experts, become interested in studying the kinds of people under a given classification; possibly to help them or advise them on how to control their behavior. These experts generate knowledge about the kinds of people they study, judge the validity of this knowledge and use it in their practice, and create certain classifications or refine the existing ones. Such knowledge includes presumptions about the people studied, which are taught, disseminated, refined, and applied within the context of the institutions. For instance, it may entail de facto assumptions,
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e.g., multiple personality patients were subjected to sexual abuse as children’ (Tekin, 2011, p. 367).
Tekin sees these ‘looping effects’ as starting points to explore how diagnosis functions as a narrative source that affects the service user’s autobiographical and social narratives. We can also understand the two main topics in this thesis—insight and user involvement—as narrative sources constructed by certain ‘parameters’. If we use insight as an example, we have service users who are seeking help as subjected to classifications. The experts, including researchers, create these classifications to define insight/lack of insight (the clinicians who diagnose and make treatment plans, the researchers who conduct research to provide explanations for mental illness, and mental health professionals who are in the practice field). The experts work in institutions and generate knowledge about insight/lack of insight, which contributes to the creation process of the concept (classifications, treatment methods, clinical research experiments and different approaches). The classified people who are defined as having insight or lacking awareness acquire knowledge about their condition from the experts, and this knowledge changes their self-perception or understanding, which in turn changes their autobiographical and social narratives (Tekin, 2011). As Tekin underlines, the DSM as a narrative (or insight as a narrative source) is a double-edged sword for the service user. Although it might be a positive process for recovery, it might also, as a symptom-based approach and biomedical disease model, remove the service user from other elements in life that are central. More seriously, it might reduce the service user’s experiences to ‘a neurobiological imbalance that is unchangeable’ (Tekin, 2011, p. 377).
Later in this chapter, we take a closer look at dominant narratives. These is a close alliance between what Tekin (2011) defines as ‘parameters’ in the ‘looping effect’ and the coconstructions of dominant narratives. The narratives in our study are seen not simply as reflections of internal or external ‘realities’ ‘but as instances of social practice in which the nature of “reality” (of themselves and of their treatment experiences) were actively constituted and negotiated in the context of the wider discursive field’ (Malson et al., 2004, p. 484).
3.3 Relevant narrative theory When adopting a narrative approach, one of the first questions to consider is how we define a narrative. I follow Denzin’s (1989, p. 37) definition of a narrative: ‘A narrative is a story that 33
tells a sequence of events that are significant for the narrator and his or her audience. A narrative as a story has a plot, a beginning, a middle and an end. It has an internal logic that makes sense to the narrator. A narrative relates events in a temporal, causal sequence’. Let us look at one of many narratives in the study and use it as an example 20.
Marianne, a mother of three, was diagnosed as bipolar some years ago. Her story addressed how her children were affected by her mental illness. She wanted the mental health professionals to talk with her children about what was going on. I asked her whether she had missed her children while she was admitted:
Yes, of course I did, but I just thought that they needed to speak. As much as I have to go to a psychiatrist or a psychologist and chat, the kids have to be allowed to go…they've got so many thoughts in their heads, and I was not able to talk like that with them. I had enough with myself. So Elise, the public health nurse here at our home - she has been fantastic for them. She had them in conversation until she somehow thought that (pause) that things looked all right (Klausen, 2015).
We can see from the excerpt that this narrative has a beginning, a middle and an end. It has a plot: it describes how worried Marianne was for her children while she was admitted. It has an internal logic and relates the events in a temporal, causal sequence: Marianne wanted professionals to talk with her children about what was going on. The community clinic nurse did just that and could reassure Marianne that things were fine. Stories are produced, distributed and circulated in society (Gubrium, 2005). How stories relate to particular social contexts requires an understanding of how these contexts affect words. A story can have different meanings in different settings. The social consequences of narratives must be understood in relation to what is at stake in the storytelling context (Gubrium, 2005).
There are a variety of schools in the field of narrative research, and there is ‘a tremendous cross-disciplinary interest in the narrative concept’ (Schiff, 2012, p. 33). Narrative studies are conducted in several scientific fields, including history, anthropology, ethnography, psychology, socio-linguistics, sociology and health science (Spector-Mersel, 2010). Moving
20
This narrative is taken from the second article in the thesis: ‘Motherhood and mental distress: Personal stories of mothers who have been admitted for mental health treatment.’
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from a marginal early status, the field now includes ‘a rich, interdisciplinary, still-expanding corpus of theoretical and research studies’ (Mishler, 2006, p. xi).
According to De Fina and Georgakopoulou (2012), narrative is epistemological in its aims; thus, narrative offers an antidote to rationality and the quantitative measures that characterized social science four decades ago. Furthermore, it is a political tool for the expression of lay experiences and voices. It represents an alternative to the modernist reality and was regarded as ‘a postmodern reaction to a modernist bias’ (De Fina & Georgakopolou, 2012, p. 20). Moreover, the narrative paradigm overlaps with social constructionism, which regards social reality as ‘constructed, fluid and multifaceted’ (Spector-Mersel, 2010, p. 211). The narrative paradigm contends that social reality is a primarily narrative reality (ibid.). According to Smith and Sparkes (2008), our lives are storied and therefore, identity is narratively constructed. Narratives are rooted in the ‘here and now’ of the narrator; stories that are told are always related to the past and the future from the perspective of the ‘here and now’. Moreover, stories can never tell the whole story; they cannot contain everything.
My point of departure is a perspective of narratives as co-constructions in socially situated actions and performances of identity (Karlsson, Löfdahl, & Pérez Prieto, 2013; Mishler, 1999). This perspective focuses on the making of the stories and the researcher as a coconstructor of the stories performed. We define the narratives in our research as topical life stories (Betraux, 1981; Pérez Prieto, 2006) because they focus on a limited period in the participants’ lives, namely, their stories related to receiving mental health treatment as a service user. Numerous approaches can be taken in narrative research. Topics such as identity (Blix, 2013), large or small stories (Georgakopoulou, 2006), counter narratives (Andrews, 2004; Bamberg, 2004), illness narratives (Hyden, 1997; Langellier, 2001; Stephens, 2011), political narratives (Andrews, 2007; Whooley, 2006) and institutional stories (Linde, 2009) are some of the considerations that have occupied narrative scholars. The narrative researcher pays attention to both content (‘the told’) and the structure of narration (‘the telling’) (Josselson, 2011b). I do the same by focusing on narratives as co-constructions in context.
This approach implies a desire to remain close to what I experienced as co-constructions in dialogues with the study participants; the interviews focused on the individual experience of participating in mental health treatment. For example, if the topic of power and oppression had been a prominent theme in the dialogues, a more ‘Foucaultian’ approach could have been 35
appropriate 21. The choice to rely on Bakthin for guidance through the scientific jungle is explained by his approach to the dialogical nature of utterances and being in the world. The self is always constructed in relation to other individuals (Josselson, 2011b), and the adoption of this approach in narrative research indicates that no individual or story is considered final or fixed: all stories are open ended and offer possibilities for new revisions to the future contained in them. Consistent with Josselson (2011b, p. 227), I understand narrative analysis as a focus on ‘patterned relationships in the flow of events and experience within a multivoiced self that is mutually constitutive interaction with its social world’. Things exist only in relation to others and we are always in dialogue with other individuals and the world (Robinson, 2011, p. 4). This coincides with both a social constructionist perspective and a focus on the telling as co-construction.
3.3.1 Narratives as co-constructions Mishler (1995) divides narrative inquiry as applied to studies of narratives into 3 models. The first model concerns causal explanations between the telling and the told and regards narratives as giving access to experiences. In 1967, the well-known sociolinguists Labov and Waletzky offered their pioneering work on personal narrative; from a performance perspective, they textualized experiences in a manner that presumes a real event prior to the storytelling (Labov & Waletzky, 1967). The second model focused to a greater extent on the telling and textualization; how text attains coherence and structure in a meaning-making event. The third model focused on the function of personal narratives and the breakthrough to storytelling as performances become reality (Langellier & Peterson, 2006). Consistent with Langellier and Peterson (2006, p. 152), I understand narratives as follows:
‘…embodied in participants who tell personal stories of experience, situated in the interactional and material constraints of the performance event, and embedded within discursive forces that shape experience, narrative, and selves.’
Narratives vary in their degree of embeddedness in surrounding discourses and social activity (Ochs & Capps, 2001), and there is clear interest among narrative social constructionist
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Foucault describes power as a panoptic gaze, the aim of which is to control the masses by monitoring the individual. This is also true in mental health services, in which Foucault argues that doctors owned the power of knowledge and that science was based on observations, classifications and the examining eye (Terkelsen 2010, Foucault 1976).
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researchers regarding the situational context (De Fina & Georgakopolou, 2012). Working with narrative as co-constructions ‘requires theory which take context as serious as it does text’ (Langellier, 1999, p. 128). A focus on the cultural production and reproduction of identities and experience is also central (ibid.). Langellier and Peterson (2006) emphasize that being framed, reflexive and emergent specifies the text-context relations in narratives. Both the performer and the audience define the narrative as a storytelling event and the storytelling is reflexive in the sense that it is both a doing and a re-doing. In our study, the participants' experiences are seen as important to investigate. These experiences were constructed during the interview talks between them and me as an interviewer; a while-doing and re-doing of the experiences that co-constructed the narratives.
Narratives are also emergent in a manner that permits change: ‘[e]mergence may refer to new text structures, event structures, and social structures, that is, to new stories, new storytelling events, and new identities’ (Langellier & Peterson, 2006, p. 155). Co-constructed narratives are always situated and thus, told within the frames of external and internal rules for certain narratives; the approach naturally shapes the telling. Co-constructed narratives can also both legitimize and critique power, and the telling is understood to be political (Langellier & Peterson, 2006). Following Andrews (2007), I agree that when we relate our stories to our lives, we say something to other individuals regarding our political worldviews. The shifting contexts of bodies, situations and dominant narratives imply that a co-constructed narrative cannot be removed from its context if we wish to obtain a deeper understanding of ‘what it is, how it works, and what it does in the world’ (Langellier & Peterson, 2006, p. 166).
3.3.2 Dominant narratives as co-constructions The three articles in this thesis describe frameworks of meaning presented by the participants in which they both mirror and challenge various dominant narratives (Andrews, 2004). Dominant narratives explain, according to modernist theory, ’the deeper reality underlying the surface of the world’ (Burr, 2003, p. 11). In modernism, the common feature of theories concerning rules and structure in social phenomena was often called ‘metanarratives’ or grand theories (ibid.). Conversely, postmodern theory rejected both the idea of an ultimate truth and the idea that the world is a result of hidden structures. Social change is not understood as ‘a matter of discovering and changing the underlying structures… through the application of a
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grand theory or metanarrative’ (Burr, 2003, p. 12). Instead, we co-construct and reconstruct narratives through social interaction 22.
In this thesis, we regard dominant narratives not as ‘ultimate truths’; instead, in line with Hänninen (2004) we understand that the cultural stock of stories represents the entirety of narrative representations that an individual hears or reads throughout life, and in every culture, some stories are more dominant or powerful than other stories. These dominant narratives are collective stories that shape personal identities and narratives (Esteban-Guitart, 2012). One dominant story about (for instance) insight is that lack of insight is a core concept of schizophrenia (Ampalam et al., 2012). Another dominant story within mental health research is that mentally ill women are inherently bad parents (Diaz-Caneja & Johnson, 2004). Dominant narratives can be traditional narratives, and they relate a personal story to given cultural standards (Talbot, Bibace, Bokhour, & Bamberg, 1996). By personalizing the dominant narrative, interviewees can construct themselves as protagonists who resist antagonistic forces (ibid.). Bamberg (2004) describes two interpretations of dominant narratives. The first interpretation relates to how narrators position themselves in relation to their stories, whereas the second interpretation describes how narrators are subjected to dominant narratives from which they cannot escape. We are surrounded by pre-existing sociocultural forms of interpretation (Bamberg, 2004). Although we are dependent on these dominant narratives (which provide us with guidance and direction in everyday life), they simultaneously render us blind to our actions. Bamberg emphasizes the complicated relationship of this double-binding; our smaller, daily employed dominant narratives are also components of a larger dominant narrative; these narratives are ‘thoroughly interwoven with each other’ (Bamberg, 2004, p. 361).
Andrews (2007) underlines this binding, contending that stories provide us with only partial insight into the narrators’ lives. Moreover, she argues that stories can be understood as windows into political periods that are not reducible to individual human beings (Andrews, 2007). Stanley (2007) also emphasizes that dominant narratives specify and control how social processes are performed, arguing that counter-narratives challenge dominant narratives and offer alternatives to dominant discourses. Andrews (2004) emphasizes that there are often 22
See section 3.1 on the social constructionist approach regarding habitualization (Andrews, 2012) and dominant narratives.
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complicated relationships between personal narratives and dominant narratives, and it is interesting to investigate how these dominant stories are used to tell new stories.
Following a social constructionist approach, I emphasize that what are regarded as dominant narratives are capable of change (Blix, 2013). Individuals expand the boundaries of and challenge dominant narratives in different ways (Andrews, 2004), and holding a perspective on narratives as socially situated actions (Karlsson, 2006) entails an approach in which an individual is never regarded as ‘fixed in any representation of his or her words and cannot claim any finality to what a story means because any story has potential for revision in future stories’ (Josselson, 2011b, p. 227). Narratives are woven into contextual conditions, implying both that interaction is the prerequisite for the construction of narrative and that narrative is a specific type of interaction (Becker & Quasthoff, 2005).
3.3.3 The role of the researcher The researcher may be understood as ‘a bricoleur, as a maker of quilts’ (Denzin & Lincoln, 2013, p. 7), who assembles representations that fit within a specific thesis. Research is an interactive process shaped both by numerous factors (including my personal history, biography, gender, and social class) and by the individuals who participate in the study (Denzin & Lincoln, 2013). As an investigator of narratives, I am not neutral about politics and the social contexts of which this thesis is a part; these issues are one reason for examining the questions that I do (Andrews, 2007). M. Andrews discusses the tell-ability of stories as related to the level of intimacy between narrator and interviewer but emphasizes the importance of context (ibid.). Researchers often make the mistake of assuming they are ‘giving a voice’ to marginalized individuals. These empowerment narratives might mask inequalities instead of redressing them, giving the impression that the research participants are ‘speaking for themselves’ instead of what they are really doing: answering specific questions, with little input into how their stories are represented in the final text (Andrews, 2007). It is problematic to view our task as researchers to assist others in articulating their narratives without asking the essential question: ‘From whose point of view is someone, or a community, voiceless?’ (Andrews, 2007, p. 41). We agree with M. Andrews (ibid.) that this point of view is likely that of a group or position that distinguishes itself from the group that it seeks to empower. The paradox of the approach of 'giving a voice to' is that it creates distance. Following Andrews (2007), we must place ourselves at risk while conducting research; it is a journey to enter someone else’s life experience and participate in the storytelling process. The narrative 39
researcher works on multiple tasks: ‘performing the story as a narrator and reflecting on the story told as a researcher, continually moving between these and other subjectivities as the conversation unfolds’ (Arvay, 2003, p. 166).
3.3.4 The interview as a relational context The Russian philosopher and literary theorist Bakhtin researched the modern novel (Bakhtin et al., 1981; Bakhtin, Holquist, & Emerson, 1986), but has become well known for his theories connected to language and communication. His contribution to the field concerning polyphonic dialogues is easily transferable to the research interview context. The research interview is polyphonic in nature; it is a context ‘in which there are many voices and discourses that cross each other simultaneously to produce knowledge about personal narratives and social life’ (Tanggaard, 2009, p. 1500). No utterances can be regarded as independent units; they exist in the world within a contextual meaning, and the understanding of a speech whole is always dialogic (Bakhtin et al., 1986). Language is social, and the living language consists of combinations of different social languages (Tanggaard, 2009) in which certain languages (narratives) are more dominant or authoritarian than other languages. Bakhtin defines language as heteroglossic, complex and a combination of different social languages (Bakhtin et al., 1981). In the research interview context, this heterogeneity may appear in the form of the interviewee or the interviewer belonging to different communities or groups or being in opposition to various dominant narratives (Tanggaard, 2009). As a researcher, I belonged to a certain community and social language. The participants in the study belonged to some of the same communities as me, whereas others in our communities and speaking our social languages were different. Following these considerations of heteroglossia, there is no general language, but instead, transmissions of past and present discourses that surface during an interview. In a social constructionist approach, narratives are regarded as emergent and defined as ‘a joint venture and the outcome of negotiation by interlocutors’ (De Fina & Georgakopoulou, 2008, p. 381). Tanggard (2009) emphasizes that there is no inherent dichotomy between subjective meanings and objective reality; the interview is a shared dialogue in which socially embedded discourses intersect and may produce new meanings or stories. Hydén, who has many years of experience with qualitative studies of men’s violence towards women in intimate relationships, discusses interviews in which sensitive topics might be a part of the dialogue between the interviewee and interviewer and emphasizes that any topic may be sensitive to the other (Hydén, 2008). Hydén’s work actualizes the tension between being a researcher and a therapist and discusses 40
the risk of being overly focused in the interview on the darker aspects of the narrator’s story, which may both ‘cause suffering and seriously limit your research’ (Hydén, 2008, p. 225). In her later work, Hyden (2014) presents the teller-focused interview, which is grounded in a dialectic manner of thinking about the narrator and the interviewer. These individuals are defined as partners who have different tasks and responsibilities in the research process (ibid.), and Hydén emphasizes both the differences and similarities between being a researcher and a psychotherapist. The two roles belong to different settings and communities, but the commonality involves offering a third ear (or voice); in this way, the world can change and become plural instead of binary, and a more complex dynamic can emerge (Hydén, 2014). Hydén also relates her discussion to Bakhtin and stresses that ‘one of the most important issues for the teller-focused interview to handle is the multi-voice character of the accounts’ (Hyden, 2014). Hydén’s work is concerned with what might appear to be sensitive topics, and she relates those topics to relational circumstances. In the relationship between the narrator and the teller and the surrounding contexts that characterize this relationship, both similarities and differences may be stressed. Hydén defines this process as ‘a dance of balancing involvement’ (Hyden, 2014). The researcher must balance her involvement with the narrator’s storytelling to ensure that the power relations are as balanced as possible (with the knowledge of the interview as an ongoing co-construction).
3.3.5 Narrative validity and reflexivity Altheide and Johnson define validity as reflexive accounting, ‘which places the researcher, the topic, and the sense-making process in interaction’ (2013, p. 390). Polkinghorne (2007) contends that there are degrees of validity that rely on a consensus within a community of speakers. Validating knowledge is an ‘argumentative practice’ (Polkinghorne, 2007, p. 476), and readers should be able to follow the research process to make their own judgment about validity. Heikkinen, Huttunen, Syrjälä and Pesonen (2012) present five validation principles for action research and narrative inquiry that I find relevant for this thesis. The first principle is what the authors term historical continuity. In narrative research, historical continuity relates to how logical and coherently the narrative proceeds. The second principle involves reflexivity, which is related to subjective adequacy. In this study, I must make the nature of my relationship with my research object transparent. The third principle concerns the ontological and epistemological presumptions to be addressed; what are my presumptions concerning knowledge and reality? How do I define narratives and their relation to the world? Have I made my research transparent: are the research methods and materials presented such 41
that my readers can follow the process? The principle of dialectics is also central: how have my insights developed in dialogue with others? The fourth principle relates to ethics: how are ethical problems addressed? Does the research provoke discussion in the field of mental health services treatment? Does the research cause service users to believe in their own capabilities and possibilities to act and therefore encourage new practices and actions? While conducting the interviews, several participants emphasized the importance of participating in research concerning user involvement. I had the sense that they believed that this research would ‘do’ something. I find this especially challenging, indicating that the ethics of the study are constantly at stake. The final principle concerns evocativeness: how well does this research evoke memories, mental images or emotions related to the theme? (Heikkinen et al., 2012, p. 8). These principles can be regarded as a guide for the entire research process, and Heikkinen et al. (2012) define research as practice to include physical (time and space), semantic (language) and social (relational) dimensions. These principles are not established as a list of criteria. Instead, they are both tentative and in flux (ibid.).
Having situated the study in a theoretical framework that involves the social constructionist and narrative approaches inspired by Bakhtin’s relational dialogism, I turn to the literature review concerning insight and user involvement.
4. Literature review—insight and user involvement Why focus on insight in relation to user involvement? Insight has developed as an important clinical phenomenon (Shad et al., 2015). It is considered a core concept within mental health services that has serious consequences for the individual service user’s admissions and treatment. Assessment of insight is complicated, and there is often a question of whether the service user’s explanation corresponds with professional opinion. However, it is important to realize that insight is a dynamic concept among professionals in mental health services; different professions and people will have different understandings of insight. In line with Hamilton and Roper (2006), we argue that a professional’s opinion about a service user’s insight will shift. In the same way, a service user’s opinion of insight will vary.
There has been a transformation from a passive recipient of treatment and care to an active participant and user of services that has occurred both within policy documents and in practice in light of Norway’s deinstitutionalization process. This transformation presupposes a service user who is not only involved in treatment but also an active part of the decision42
making process. How can we promote insight and user involvement in a way that can inspire better clinical practice? There has been little qualitative research, and even less narrative research, concerning insight among service users (Korsbek, 2013). According to Bracken et al. (2012), there has been a technological paradigm within mental health services in which mental health problems can be mapped and categorized with the same logic used in the rest of medicine. Most research on insight stresses biomedical interventions as important for successful treatment (Macnaughton, 2008). Our study strives to contribute to changing this view; we look at insight as a dynamic concept, not a static and measurable term. Accordingly, there is a need for empirical studies of insight and user involvement that focus on the importance of insight in relation to treatment. In light of this need, our study fills a gap with its focus on service users’ narratives that can provide a richer understanding of experiences related to insight and user involvement. The clinical perspective is challenged by service user experiences that focus on first-person perspective, underlining insight as a social coconstruction that includes all involved people. It is our intention that the study’s orientation toward insight as a relational and dynamic process with significant consequences for user involvement will provide mental health practice with new perspectives.
4.1 A service user-oriented literature review There is substantial disagreement within various research fields concerning insight and user involvement. These discussions concern the decisions made in the everyday lives of service users. In everyday practice, insight is challenging for both clinicians and service users. It is important to emphasize the connection between the challenges linked to insight in practice and research that focuses on these challenges. This highlights insight as an extensive and compound issue in clinical practice and research closely linked to user involvement in mental healthcare. Academic and practical developments in mental health have emphasized service users’ perspectives. This is particularly true with respect to user involvement (Nolan, Hanson, & Magnusson, 2011), whereas issues related to insight have not kept pace. If research and practice concerning insight develops in the same direction as user involvement, it will have consequences for questions related to treatment and compliance. Within this study, service users’ perspectives are linked to listening to what service users say and experience. Furthermore, this study promotes service users’ best interests through joint storytelling to develop real user involvement.
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I argue that a presentation of insight and user involvement in mental health services should specify a relational approach based on a dialogical practice in which service users’ experience-based language can form the foundation for shared decision making.
The literature review constitutes the entrance to the concepts of insight and user involvement and is intended to form the basis of an understanding of the study's aims. I have focused on studies that do not always provide a comprehensive or complete picture of the ongoing academic debates surrounding insight and user involvement. Instead, the literature review adopts a service user-oriented perspective that concentrates on discussions linked to insight in clinical everyday life. I start this section by painting a picture of Norwegian clinical practice, focusing on insight into patients’ rights. I introduce the clinical intention of discussing insight. I present the development of decision-making models that are closely related to insight. I also discuss autonomy and coercion. I give some thoughts on narratives and insight. I place our research within the frames of a social constructionist perspective and look at the consequences of this frame has for the concepts of insight and therefore, user involvement. The relationship between insight and decision-making processes is highlighted.
User involvement is the topic of the second part of the literature review. The ideal of user involvement is described in the Escalation Plan for Mental Health (Ministry of Health and Care Services, 1997-98). The Plan’s requirements include service that is both comprehensive and coordinated. A good professional environment is important. Furthermore, it is important to ensure that users are treated with respect, that mental health services are provided on the basis of shared values, and that the user experiences the continuity of stable relationships. People who need help should get help, and people with mental illness should receive adequate services in line with the legislation (Granerud, 2011). These requirements must be considered goals in mental health service work. Thus, user involvement is both a legal right and a means to ensure the protection of user needs in care and treatment. A central goal of improvement is to build users' rights to participate in the formulation and execution of services. In this section, I examine user involvement in mental health care. Next, I present various degrees and models of user involvement as central in relation to insight. I offer an exploration of user involvement before reflecting on that concept.
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4.2 Norwegian clinical practice: The problem of insight and patients’ rights Norwegian health legislation is associated with a general rule of consent. Man is autonomous and has a full right to determination with regard to his own freedom, health and life. This principle is affirmed both in international human rights instruments and in the Norwegian Patient Rights Act. Decision-making competence can be remitted only when the patient is obviously unable to understand what consent entails (Ministry of Health and Care Services, 2011)—in other words, when he or she lacks insight. Within this understanding, this concept is linked to physical or mental disorders, senile dementia or mental retardation patients. An assessment of decision-making competence is linked to an assessment of the person's ability to understand. Furthermore, it must be obvious that the person is unable to understand the rationale for health care and what consent entails. The patient should also have received enough information about her/his health condition, possible causes and prognosis, along with the possible risks and side effects of health treatment (ibid.). The information given must establish a basis for discussion, and the patient’s degree of understanding is also related to the dissemination of information. This information should be adapted to the individual patient's circumstances and needs. In practice, this means taking into account the background and circumstances connected to the patient and her/his illness, age, mental state, language, culture and experience. Furthermore, the patient's consent, shall not lapse for more than the extent necessary. Not having consent in one area does not mean you do not have consent in other areas. In Norway, it is the professional who decides whether the service user is competent to consent (Ministry of Health and Care Services, 2011).
4.2.1 The clinical intention of discussing insight The purpose of discussing insight in mental health-care practice, from the professional’s point of view, is clinical and involves an attempt to identify the problem with regard to enhancing service users’ insight level or awareness of illness. A procedure developed by Amador et al. called the ‘Scale to Assess Unawareness of Mental Disorder’ (1993), emphasizes not only general awareness of the disorder but also the specific symptoms of
‘hallucinations, delusions, thought disorder, inappropriate affect, unusual appearance, stereotypic or ritualistic behavior, poor social judgment, poor control of aggressive and sexual impulses, slow or impoverished speech, flat or blunt affect, avolition-apathy, anhedonia or asociality, poor attention, confusion-disorientation, unusual eye contact, and poor social relationships’ (Shad et al., 2015, p. 113). 45
For each of these topics, the service user is asked about his/her awareness in both the present and the past. According to Amador et al. the scale is a ‘standardized scale on which ratings are made on the basis of patient interviews’ (1993, p. 874). This scale gives an idea of how complicated and extensive it is to conduct an interview related to measuring insight from a clinical perspective. A great deal is based on the professional's discretion. Although measuring insight in praxis can be understood as part of the need to prepare a diagnosis, it becomes difficult when insight is related to static and essentialist characteristics 23 of the individual service user. According to Hamilton and Roper (2006, p. 417), ‘no assessment of insight is simply made or sustained in a clinical setting’. When talking with service users about their mental illness or treatment, clinicians and family members alike are often frustrated by the service user’s lack of insight (Amador & Kronengold, 2004). This is an area of potential conflicts. Service users who feel coerced into accepting medication and services for a condition that they do not believe they have often refuse help and are exposed to more coercive treatment because they are unaware of their mental illness in a medical/clinical sense. A relational concept of insight creates the dynamics that seek to convey the different perspectives so the people involved can share treatment decisions. A differentiated understanding of insight can form the basis for better and more sensitive communication about insight among everybody involved. A more respectful dialogue about insight might also raise awareness during both the decision-making process and the actual practicing of user involvement (Lorem, 2014).
Insight into illness involves the service user’s awareness of her/his illness (Engh, 2010). Grisso and Appelbaum (1995; Grisso, Appelbaum, Mulvey, & Fletcher, 1995) define four standards in the MacArthur Treatment Competence Study for determining whether a service user has insight: the ability to communicate a choice, understand relevant information, appreciate the nature of the situation and its likely consequences, and rationally manipulate information. The MacArthur study is, however, considered inadequate from a relationaloriented perspective because of its oversized focus on trait descriptions and cognitive properties. In contrast to Grisso and Appelbaum (Grisso & Appelbaum, 1995; Grisso et al., 1995), Wang et al. (2011) define insight as a patient’s recognition of having a mental illness,
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In mental health practice, an essentialist perspective would be that either you have insight or you lack insight.
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the social consequences of the diagnosis and the need for treatment. Insight has been more broadly defined as connected to five dimensions: (1) the patient’s awareness of having a mental illness, (2) awareness of the social consequences of the illness, (3) awareness of the need for treatment, (4) awareness of the symptoms and (5) attribution of symptoms to the illness (Mintz, Dobson, & Romney, 2003, p. 75). Amador and David (2004) report that as a multidimensional concept, insight is not only shaped by individual psychology and the limitations of biology (as in cognitive limitations and anosognosia 24) but also affected by social constructions of the illness.
A different approach to this definition is presented by Kravetz, Faust and David (2000) and, Alreja, Sengar, Singh and Mishra (2009), who describe the field as ‘a mélange of ideas about awareness of illness, acceptance of illness, willingness to take medication or other treatment, and endorsement of other expectations that are applied to people with mental disorders’ (Alreja et al., 2009, p. 39). In their view, the one constant in the literature is that insight is based on the extent to which the patient acknowledges a biomedical explanation for the illness (ibid.). Insight can be studied as a set of descriptive beliefs and a personal narrative (Roe & Kravetz, 2003). Insight can be understood as dynamic and provisional, ‘not only within the context of the particular communicative event but also, potentially, within a particular story line, and it is the discursive form of what is being said that is crucial in understanding and exploring insight’ (Galasiński, 2010, p. 66). To make a preliminary summary of the definition of insight, there is disagreement within the literature regarding not only what insight is but also its etiology (Galasiński, 2010; Galasiński & Opaliński, 2012; Kinderman, Setzu, Lobban, & Salmon, 2006; Osatuke, Ciesla, Kasckow, Zisook, & Mohamed, 2008; Saravanan, Jacob, Prince, Bhugra, & David, 2004). The definition of insight has changed over time, and in line with other literature reviewers (Mintz et al., 2003), I agree that ‘it might be difficult to make meaningful comparisons across studies’ (Schwartz, 1998).
If we attempt to look at the concepts of insight and lack of insight from a practical standpoint, we can say that the concept of insight is, on a medical and clinical horizon, related to whether
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Anosognosia, which is the lack of an awareness of an illness, is a common symptom of schizophrenia and bipolar disorder with psychotic features (The Anatomical Basis of Anosognosia – Backgrounder: http://www.treatmentadvocacycenter.org/about-us/our-reports-and-studies/2143.)
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the service user has an understanding of being mentally ill (Skårderud, Stänicke, Haugsgjerd, Maizels, & Engell, 2010). Insight is related to illness and understood as the opposite of ‘lack of insight’. Lack of insight means that one does not think one is ill, or at least not in the sense presented by mental health professionals (often in the form of a diagnosis and the need for medication). Conversely, insight means that you understand that you are experiencing a condition that falls under the diagnostic term of mental disorder and therefore that you need mental health treatment.
Lack of insight has primarily been connected to severe mental illness and psychotic disorders. Nevertheless, lack of insight is not exclusively to psychotic conditions. People with severe obsessive-compulsive disorder, eating disorders, dementia, some serious anxiety disorders, hypochondriasis or even deep depression can express a lack of insight (Skårderud et al., 2010).The same is true of certain rare neurological disorders caused by various brain injuries. According to Dam (2006, p. 114), ‘insight is used as a means to describe the patient’s understanding of his or her disorder and to assess the necessity of treatment, compliance, suicide risk and prognosis’. In line with this notion, the concept of insight ‘can be used in connection with all illnesses, psychiatric as well as somatic’ (ibid.).
In connection with less serious mental disorders, the term insight is used, for example, in the context of psychodynamic psychotherapy (Messer & McWilliams, 2007). Insight therapy is a term for psychotherapies with a sufficient intensity and duration that aims the service user to gain insight into the emotional and relational factors, past and present, that have given rise to complaints /symptoms and /or maintain them. The aim is that the service user obtains an understanding of his or her own contribution to the state for which assistance is sought. Service users should achieve an experience of ownership of their own feelings, motives and choices, and a strengthened agency, perception of own possibilities of action and responsibility for their actions. Increased ability ownership and agency thus occur with increased ability to accountability, accountability for self-care and responsibility for relations with other people. From this point of view, insight can be defined as ‘gaining a new perspective or a new understanding’ (Bohart, 2007, p. 258).
Psychoeducation as a method has come into the mental health field in recent years (with courses in stress coping, anxiety coping, depression mastering, etc.). It might add an element to the more traditional concept of insight, namely, the ability to understand which conditions 48
in situation and lifestyle that can protect against the risk of exacerbation /relapse and which precautions should be taken to avoid this risk (Teichert, 2009).
The introduction of mentalizing-based treatment is attributable to the concept ‘mentalizing ability’, which is widely known in academic circles. ‘Mentalizing’ refers to general human phenomena and is a collective term for implicitly and explicitly interpreting one’s own and others’ attitudes as meaningful utterances of inner life, whether we are discussing needs, desire, emotions or common sense (Skårderud & Sommerfeldt, 2008). Mentalizing means the ability to understand how oneself and one's behavior are perceived by other people and how to act upon on them. It also means the ability to ‘read’ other people's state of mind and intentions somewhat correctly, thus regulating one’s emotions in line with a realistic view when encountering others.
From a mental health treatment standpoint, the difference concerning insight is related to the degree of insight. The objective of treatment is to increase the service user's ability to realistically interpret the world around her/him and the feelings and thoughts in her/his own mind, thus giving her/him the ability to act in the world for the benefit of both themselves and their surroundings.
A study by Lorem (2005) that investigates how insight was evaluated by mental health professionals and used in treatment reveals that therapists essentially define insight in line with the scientific literature; it involves knowing that one has an illness, what that illness is and how to relate to it. However, when therapists described how insight was performed in practice, the term seemed to include several dimensions. It appears that various aspects of insight were assumed in various types of situations. Insight was understood as an awareness of suffering (you know you are sick) and recognition of the need for help. Furthermore, it was related to behavior (to behave in a manner that avoids creating negative repercussions), as rational learning (one can learn from one’s experiences and explain one’s own situation), as an understanding of causes (in agreement with the clinician's assessment) and as compliance with treatment (consent to treatment and if necessary, medication). Based on these dimensions, it may appear that professionals have focused on service users’ lack of insight instead of on having insight. This may indicate a problem-oriented focus concerning insight.
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The two concepts—illness insight and lack of insight—thus show that the phenomena is both multifaceted and changing. Within the picture as presented above, these are also concepts that belong to the expert’s language. In the Norwegian context, it is the doctor, psychologist, clinician or professional who assesses whether insight is present in the meeting with the service user. Insight is primarily seen as exclusively inherent to the service user. This results in the highest degree of actualization of the challenge of how insight can be performed in dialogues between service users and professionals in everyday life during mental health treatment.
4.3 Theoretical positions from which to consider insight As an introduction to this section, I first underline insight and lack of insight as related to many topics in clinical practice. One topic that treats this issue is neuropsychological impairment (Karow et al., 2008), a second is phase of illness (Quee et al., 2010; Wang et al., 2011), a third is psychopathology (Mingrone et al., 2013), further self-stigma and recovery orientation (Kvrgic, Cavelti, Beck, Rüsch, & Vauth, 2013), and depression and suicide risk (Ampalam et al., 2012). According to Macnaughton (2008), the dominant view in insight research is that biomedical interventions are important for producing insight, which in turn promotes compliance. Treatment adherence will enable the individual to achieve control over symptoms and obtain a better quality of life.
Lysaker, Roe and Yanos (2007) illustrate how research has paradoxically linked insight to both improved functional outcomes and reduced hope and self-esteem. The insight paradox is well known in this field and affects numerous aspects of illness and care. Poor insight has been synonymous with poorer compliance (Grisso, Appelbaum, & Hill-Fotouhi, 1997), clinical results (Quee et al., 2010), social function and relationships with mental health professionals (Kvrgic et al., 2013). Poor insight has been understood as a deficit within the individual, without reference to the service users’ surrounding contexts (Dolson, 2005). Greater insight has been related to depression, and Ampalam et al. (2012, p. 45) insist that ‘most clinicians believe that poor insight… though problematic for treatment adherence, may be protective with respect to suicide’. Within the clinical approach, greater insight is related to adherence and satisfaction with antipsychotic treatment, and improving insight has been a primary focus of treatment (Schennach et al., 2012).
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Decision-making competence, compliance, adherence and concordance are topics that are seen as critical to service users’ abilities to participate in their own treatment and are treated as decision-making models that are closely related to insight. Autonomy and coercion are also important perspectives in relation to decision making. Because of the limited scope of this thesis, the presentation of these perspectives will not be extensive. The literature review is intended to give the reader an insight into the field.
4.3.1 Development of decision-making models Insight has been considered important for the ‘engagement in treatment, the psychotherapeutic progress and a good prognosis’ (Karow et al., 2008). Various schools of thought have presented a diverse spectrum of research connected to insight in mental health treatment with emphasis on different aspects of practical challenges.
Decision-making competence is related to the service user’s right to refuse or accept recommended treatment (Appelbaum & Grisso, 1988). When a service user is considered incompetent to make a treatment decision, he or she is denied this right and others make the decision. In clinical practice, the professional often presumes competence on the part of the service user. Often the professional will use subjective judgment and clinical experience when deciding whether the service user has competence to make decisions concerning treatment and will not apply the standards suggested in the literature (Vollmann, Bauer, Danker-Hopfe, & Helmchen, 2003). Decision-making competence is understood as a person’s ability to 1) understand relevant information, 2) retain that information, 3) use that information as part of the decision-making process, and 4) communicate his/her decision (Appelbaum & Grisso, 1988; Grisso & Appelbaum, 1995; Grisso et al., 1995; Richardson, 2010). The MacArthur Treatment Competence Study by Grisso and Appelbaum underlines the definition of decisionmaking competence with a clinical intention; they seek to identify where a lack of competence resides according to the definition of competence so that professionals can work with the service user to improve insight. They also underline insight as a nuanced concept that cannot be circumvented in practice and is too multifaceted to be reduced to a matter of agreement with the clinician (Grisso & Appelbaum, 1995). Appelbaum et al. (1998) have developed a new instrument to operationalize a patient’s ability to make competent treatment decisions (Owen et al., 2013). The MacArthur Competence Assessment Tool is a semistructured interview that focuses on understanding, appreciation, reasoning and expressing a choice (ibid.). This approach focuses on what professionals require to enable the service user 51
to obtain better insight. According to Vollmann et al. (2003, p. 1470), ‘[C]ontroversy surrounds the question of whether objective testing methods can replace clinical assessment of competence’. The MacArthur Competence Assessment Tool has been criticized for its focus on exclusively cognitive biases and its lack of more empirical, methodological and ethical perspectives (Breden & Vollmann, 2004).
Compliance has been defined as whether a person’s behavior corresponds with medical or health advice (Morris & Schulz, 1992). Essentially, it is related to taking medications, following diets and more practical issues. Compliance is a descriptive term that describes the extent to which the service user follows the doctor's advice. Thus, it says something about how the service user acts, but nothing about intentionality (Lorem & Bakken, 2007). Compliance is measured both directly (considering, for instance, medication) and indirectly (for instance, therapeutic or preventive outcome) (Morris & Schulz, 1992). Compliance with treatment is seen as ‘the key link between process and outcome in medical care’ (Vermeire, Hearnshaw, Van Royen, & Denekens, 2001, p. 339). Medical non-compliance has been a central focus in research (Gray, Wykes, & Gournay, 2002; Vermeire et al., 2001), and compliance research has generally focused both on non-compliance and on strategies to improve compliance (Morris & Schulz, 1992). According to Lorem and Bakken (2007) the concept of compliance has been criticized for ‘medicalizing’ the problem; in addition, it is the clinician who has the power to define compliance. Vermeire et al. (2001) see compliance as a word with negative connotations and understand the definition as suitable only for medical interventions. Vuckovich find the term compliance to be politically incorrect, primarily because of its ‘implications of coercion’ (2010, p. 77). Vuckovich writes in the context of involuntary psychiatric treatment and discusses the term compliance with respect to the concept of adherence. According to Vuckovich, medication adherence is the goal in this context. However, coercion is necessary to achieve the remission of psychosis. In this way, Vuckovich distinguishes between the terms compliance and adherence: ‘[F]or patients’ longterm benefit, the ultimate goal is adherence, but when involuntary patients are psychotic and very disabled by illness, the immediate objective is compliance’ (2010, p. 78). This gives the discussion of which concepts to use and when a new perspective.
Adherence in relation to mental health treatment is challenging for clinical practice (Thompson & McCabe, 2012) and likely to be influenced by a ‘complex interaction of treatment, patient and clinician factors’ (Byrne & Deane, 2011, p. 284). It has been argued 52
that the term adherence focuses more closely on a collaborative clinician-service user relationship than does the term compliance (DiMatteo, Haskard-Zolnierek, & Martin, 2012; Martin, Haskard-Zolnierek, & DiMatteo, 2010). In other words, adherence is understood as an alternative to compliance (Vermeire et al., 2001). According to this perspective, service users’ adherence is linked to communication, and collaborative communication and inclusion of the service users’ perspective in relation to treatment decisions is underlined (Thompson & McCabe, 2012). DiMatteo et al. (2012) present a clinically useful model for improving adherence among service users. The model consists of three important clinical actions. The first action involves giving the service user the right information. This includes encouraging the service user’s participation in treatment and treatment decisions, listening to the service user’s concerns, and building trust and empathy. The second action involves helping service users believe in and commit to treatment. This action addresses the service user’s beliefs, attitudes and motivation, as expressed in cognitive, social, cultural normative and contextual factors. The third action involves helping service users overcome practical barriers to treatment adherence (DiMatteo et al., 2012, p. 74). This model addresses non-adherence as a compound problem that can be overcome only through the participation of both the clinician and the service user. The model also includes all the members of the service user’s healthcare team and the service user’s significant others (ibid.).
Concordance is a newer, alternative model that emphasizes consensus and compliance (Lorem & Bakken, 2007). This model was introduced by a report by the Pharmaceutical Society of Great Britain in 1997 25, which introduced the concordance model as a shared decision agreement. The report underlined the model as a ‘paradigm shift’ from more compliance-oriented practice to a change in culture (Segal, 2007).The concepts of compliance and adherence have been exposed to sustained criticism alleging that both concepts have limitations in the context of health-care treatment (Bissell, May, & Noyce, 2004). Critics have claimed these perspectives to focus on whether service users are following their doctors’ orders (Segal, 2007). Concordance, however, is based on service users’ increased involvement in treatment processes. The term has been mostly linked to the domain of prescription of medication; however, it is also related to the concept of shared decision making (De las Cuevas et al., 2011). Concordance is known as a more patient-centered approach and like shared decision making, there are four central elements: partnership, communication, 25
Marinker (1997) From compliance to concordance: achieving shared goals in medicine taking. London: Royal Pharmaceutical Society; Merck, Sharp and Dohme.
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information giving and agreement (Jordan, Ellis, & Chambers, 2002). According to Jordan et al. (2002), the main difference between shared decision making and concordance is that whereas shared decision making is about the whole process, concordance is about the outcome of the process 26. Segal (2007, p. 92) criticizes concordance as a concept not in turmoil with paternalistic medicine, ‘but rather an instrument of a more cagey paternalism’. It focuses on illness description and diagnosis to establish the basis for potential solutions (Lorem & Bakken, 2007).
The transition between the models presented in this section is fluid and overlapping. It can be difficult to distinguish one model from another, thus underlining some of the challenges experienced by professionals in deciding whether a service user has insight. The change from compliance to concordance also says something about the transition from a passive service user role to a service user who is expected both to take part in decision making and to contribute to his or her recovery. The changing definition of the service user is enshrined in § 3.1 of the Patients’ Rights Act: ‘Patient and users have the right to participate in the implementation of health services. This includes the patient's right to participate in choosing between available and justifiable examination and treatment. The form should be adapted to the individual's ability to give and receive information.’ (https://lovdata.no/dokument/NL/lov/1999-07-02-63#KAPITTEL_3). The Patients’ Rights Act further emphasizes that services shall be designed (to the extent possible) in collaboration with service users. The question of insight actually becomes more important with this development within user involvement in mental health policies and guidelines. The crucial question is whether we have the type of clinical practice demanded by the new role of the service user. In addition, how can professionals and service users work together to promote insight? This issue will be further examined in the discussion chapter.
4.3.2. Autonomy and coercion Autonomy is a central concept in relation to insight. Beauchamp and Childress (2001) present a perspective on personal autonomy that emphasizes an individualistic and rationalistic understanding of the concept. Autonomy has been considered a key concern in biomedical ethics (Entwistle, Carter, Cribb, & McCaffery, 2010). It is a central concept in modern health ethics; traditionally, control over one’s actions and the capacity for rational deliberation have 26
Shared decision making will be further discussed in section 3.3.2, which concerns various models of user involvement.
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been central elements in discussions of the concept (MacDonald, 2002). In general, personal autonomy is associated with service users’ ability to make decisions about which health care interventions he or she will receive (Entwistle et al., 2010). Walter and Ross (2013, p. 172) assert that autonomy is ‘best understood relationally’ because individuals are socially embedded in and formed by the context of the social relationships to which they belong. A relational understanding of autonomy can offer valuable additional insights for clinical contexts (Entwistle et al., 2010). The participants in our study are always located within interpersonal relationships and broader social contexts while admitted. Critics of the more traditional perspective on autonomy understand individual autonomy as ‘socially constructed’; ‘the capacity and opportunity for autonomous action is dependent upon our particular social relationships and the power structures in which we are embedded’ (MacDonald, 2002, p. 197). For the participants in our study, their relationships with certain persons and the community mental health center or mental hospital must be constituted such that the participants can be afforded genuine opportunities to make choices that affect their treatment (MacDonald, 2002). Relational autonomy highlights the social and situationspecific nature of the concept; therefore, it can facilitate more nuanced assessments of the forms of support that mental health professionals can offer service users (Entwistle et al., 2010). Health interactions can exacerbate or alleviate service users’ potential for autonomy, and the concept of insight can be understood as a core concept for developing the basis for relational autonomy.
Coercion is another central topic. The concept of insight has implications for compulsory treatment, but the use of coercion falls outside of the purposes and limitations of this thesis. Accordingly, I give a brief overview of coercion in relation to insight. Coercion is a compound notion that combines ‘persuasion’ with compulsory treatment order’ (Szmukler, 1999). Coercive treatment is relatively common in mental health care (O'Brien & Golding, 2003) and often arises out of complex situations (Lorem et al., 2014). Coercion involves restraints of service users’ actions and decisions and is often understood by professionals to be for the service users’ own good (O'Brien & Golding, 2003). A mutual understanding of coercion is difficult to achieve because service users and professionals often evaluate coercion differently (Lorem et al., 2014). Coercion is directly related to the notion that service users are ‘incompetent to make decisions for themselves or to lack autonomy’ (O'Brien & Golding, 2003, p. 170). The traditional justification for coercion has been that service users lack competence (insight) and professionals are free to coerce them for their own good (ibid.). 55
Coercion is also related to the paradox of insight 27 as a concept: service users are ‘doomed to’ confirm their diagnosis regardless of how they react to the information that they receive. If they accept a diagnosis, for example, they agree to terms, despite the fact that if they really have the disease, they are not supposed to be able to have such insight and ability to consent. To agree with a diagnosis mean that all your beliefs, ideas and decisions as a service user become attached to a diagnosis that coincides with a lack of insight. If the service user, however, either denies the diagnosis or refuses to accept it, this action can be used as evidence that the person lacks insight and therefore must have a mental disorder (Roe & Davidson, 2005; Roe & Kravetz, 2003). The paradox of insight can be seen as a ‘Gordian knot’ 28 that leads to more compulsory care, which complicates both alliances and service users’ experience of care (Lorem et al., 2014). Coercion is controversial and the dilemmas of clinical assessments have become as diverse as the principal discussions related to the concept (ibid.).
4.4 Narratives and insight Insight is a controversial concept in a field that is no less complicated or controversial. Critiques of current research are made from both within and outside a quantitative paradigm (Galasiński, 2010). Contradictory findings and the lack of a gold standard measuring renders insight controversial in the research (Schennach et al., 2012). Qualitative research concerning insight (Galasiński, 2010; Galasiński & Opaliński, 2012; Korsbek, 2013; Roe & Kravetz, 2003; Williams, 2008) has offered further perspectives on the topic. However, there are few qualitative studies, and both Williams (2008) and Korsbek (2013) primarily attempt to revise the concept of insight into new theoretical recovery approaches. Williams (2008) emphasizes the need for an approach that includes the postdiagnosis recovery phase in which the roles of socialization, identity and stigma are underlined. Consistent with Roe (2001), Korsbek (2013) considers the most important question for the recovery process to be the transformation of one’s identity as a patient into one’s identity as an individual. There is, according to Korsbek (2013), a lack of empirical studies on personal recovery stories connected to insight and the importance of insight in
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The paradox of insight is particularly linked to schizophrenia. An intricate knot tied by King Gordius of Phrygia and cut by Alexander the Great with his sword after hearing an oracle promise that whoever could undo it would be the next ruler of Asia. This concept illustrates an exceedingly complicated problem (http://www.thefreedictionary.com/Gordian+knot). 28
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relation to treatment. In a qualitative, constructionist discourse study by Galasinski and Opalinski (2012), nine specialist psychiatrists were interviewed. The study focused on insight in practice, and Galasinski and Opalinski found the specialists to be embodiments of the dominant medical perspective. The service users were expected to ‘adopt and accept the psychiatric view and understanding of their experiences’ (2012, p. 1465).
Roe and Kravetz (2003, p. 423) consider narratives useful in examining a lack of awareness as an alternative to the biomedical approach. They describe a narrative approach as ‘relatively open-ended and free from a priori assumptions’ (ibid.). Galasinski develops the narrative approach within a discursive framework and defends it as being outside the ‘the rigid medical frame’ (2010, p. 80). He holds that the clinical model of insight is problematic and concludes that narrative data offer an alternative perspective. Insight must be defined as dynamic and context-dependent and is a discursive, performative and constructed concept. Galasinski indicates a different approach to insight in psychiatric practice (ibid.). Consistent with Gilleen, Greenwood and David (2011, p. 61), who understand insight to be ‘multiply fractionated and multiply determined’ and note that therapeutic interventions might be beneficial for treating individuals who lack awareness of their illness, we recognize the need for a different and more dialogue-oriented approach to insight.
Narratives can illustrate the variations of insight. Galasinski is the only qualitative researcher of whom we are aware who, consistent with our study, insists that insight is a verb; it is something being performed, something that an individual does (Galasiński, 2010, p. 74). However, Galasinski appears to devote little attention to the social experiences associated with receiving and approving a diagnosis of mental illness. Engaging in insight involves the adoption of a new identity that changes both how individuals perceive themselves and how they are perceived by other individuals (Alreja et al., 2009).
4.5 A conceptualization of insight from a social constructionist perspective Chapter 3 of the thesis outlined the social constructionist perspective and narrative approaches chosen as epistemological and ontological background for our research. In this section, I focus on the conceptualization of insight in a social constructionist perspective. As we have seen, there are many practical approaches to insight and decision making concerning whether a service user can be defined as either having or lacking insight. Social constructionism focuses on how knowledge is constructed in daily interactions between people (Burr, 2003). 57
Knowledge is ‘historically situated and embedded in cultural values and practices’ (Iversen, Gergen, & Fairbanks, 2005, p. 694). Meaning-making is a social, fluid and discursive process, and therapeutic relationships are dependent on the therapist and service users’ actions in therapy (Sutherland, 2005). In the context of therapy or admission to mental health care, the relationship between the professional and the service user can emerge and evolve in the interactions that are occurring (ibid.). Decisions concerning insight can be understood as reducing a challenging process into a narrow and simplified structure based on the expert’s view, which is not in contact with the service users’ understanding.
The social constructionist approach sees the world as a product of social processes, and therefore there ‘cannot be any given determined nature to the world or people’ (Burr, 2003, p. 5). Burr claims that no inner essence makes people what they are. Essentialism is considered to trap people in limited personalities and identities that can lead to pathology within traditional psychology, which leads to an even more oppressive practice (ibid.). Reality (and henceforth concepts such as insight and user involvement) is something we construct between us, making our own versions. Insight is always derived from looking upon the concept from one perspective or another. All knowledge is time and culture-bound and from this perspective, insight is something co-constructed between the service user and all the people involved at a certain moment. This approach adds a dynamic and relational character to the concept of insight. Dolson (2005, p. 75) defines insight as a product of the clinical interview, ‘namely, the dialogic relation between the patient and the clinical interviewer’. Dolson further claims that the production of insight is ‘ultimately a processual and transactional phenomenon which arises out of the narrative construction of experience and the dialogic negotiation of the individual’s “authored” experience’ (2005, p. 75). I find Dolson’s point of view to be interesting, but it emphasizes co-construction to a lesser extent.
Based on a social constructionist approach, the DSM is problem-centered and tends to favor the expert’s view as more important than the experience-oriented knowledge of the service user. Critics may define the DSM as a social construction ‘that privileges the professional and disempowers the client’ (Iversen et al., 2005, p. 695). The professional’s process of deciding whether the service user has insight is related to a tradition within a particular culture that fundamentally opposes the social constructionist approach. When discussing the relation between social constructionism and the narrative approach in section 3.2, we saw that the
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DSM could be understood as a source of narrative, which in turn makes it a more processoriented construction than a static manual.
In line with Iversen et al. (2005) I think it is essential to not look at social constructionism as definitive, but instead to view the theoretical position as a contribution to a constructive and reflexive dialogue concerning practical challenges. I understand insight as a relational process. Within the constructionist perspective, we can define insight as an ongoing process; ‘[c]onstructionist theory invites the practitioner to question, displace, and/or eschew the traditional position of authoritative voice in favor of a dialogic and collaborative orientation’ (Iversen et al., 2005, p. 699). By investigating the concept of insight in collaborative inquiry with the service users and making room for experience-based language in the dialogue, we are approaching insight from a social constructionist understanding. We can challenge existing realities, realize new and other realities and engage in collaboration while continuing the dialogue concerning insight (Iversen et al., 2005). Relational insight is further discussed in the last section of this chapter.
4.6 The relationship between insight and user involvement User involvement strengthens the quality of treatment services that are tailored to the service users’ needs and opportunities. User involvement at the individual level involves meeting service users with respect and sensitivity, along with increasing their opportunities to influence their treatment. Service users are entitled to access information about rights, illness and opportunities 29. User involvement also includes an overarching perspective that treatment not only represents society's desire to persuade service users to engage in specific types of behavior (e.g., preventive medicine) but also seeks to strengthen service users’ potential to recover. User involvement is intended not only to counter stigma and prejudices but also to empower the individual service user. To implement this in practice, certain conditions must be present:
-Service users must be competent to make decisions concerning treatment. -Professionals must provide service users with the necessary information about treatment methods and measure the likely benefit and purpose of treatment along with the risks and
29
See The Patient Rights Act: http://lovdata.no/dokument/NL/lov/1999-07-02-63.
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alternative treatments. -Service users must have the opportunity to make decisions free of coercion.
The problem is that the ability to express consent in an appropriate manner can be impaired in certain stages of life and illness. This means that some service users may have a limited ability or be unable to give informed consent to treatment. The consequences of limited/lack of insight have many challenges in practice, especially user involvement. Professionals might have different views of insight depending on whether they emphasize decision competence, compliance, adherence, being aware of symptoms (Beck-Sander, 1998) or implications for user involvement.
That said, what happens when professionals encounter service users who appear to lack insight? How should we strive for a form of insight into dialogue with such service users? Insight is related to increased user involvement and thus is a goal for all mental health treatment in Norway.
If professionals inform a service user that her/his understanding of herself/himself and her/his position in relation to the world is distorted (i.e., not in conformity with the common human reality), we challenge the person’s concrete delusional performances. If we say, ‘this is a delusion’ or ‘you're psychotic’, service users might get the impression that it is easy for the clinician to label her/him and her/his experience, with the potential result of a struggle between two irreconcilable positions (Bentall & Swarbrick, 2003).
It is important to listen to service users’ own perception of reality, especially during their first contact with admission or treatment. It is common to think that the service user is experiencing a conflict between two competing tendencies: the tendency of a closed, selfcentered, solipsist "omniscience" (giving rise to delusions) on the one hand, and the tendency to continuously take into other people's influence as a corrective or supplement to one's own understanding (learning from experience) on the other hand (Bion, 1984). In psychiatric practice, we meet individuals, each with a unique life history and unique biological and experience-based assumptions. We must draw attention to the service users’ beliefs about themselves and their own value both in relation to other people and with regard to their place in the world (Haugsgjerd, 1983).
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A receptive and reflective dialogue in which service users’ understanding of themselves, their position and any task in the world, their relationship to people (living and dead), bodies (real and imaginary) and the world are being listened to in a sensitive manner can be stimulating to insight. Language is a bridge between subjective perceptions of reality (Haugsgjerd, 2013).
Such insight is not limited to only the first encounter with mental health services. People suffer from prolonged mental illness and sometimes situations will emerge in which there is a possibility of a renewed interest in the real world outside one's own thoughts. These situations may be associated either with new people entering treatment relationships or with a change in the person’s life situation, such as moving from one care or treatment device to another. I think this also might occur in a dialogue in which the relational, dynamic understanding of insight is underlined.
4.7 User involvement in mental health care To date, there is consensus on user-oriented practice in mental health services (Storm, Rennesund, Jensen, & Mikkelsen, 2009). Norwegian legislation provides clear guidelines for improving services to individuals with mental illness through the Escalation Plan for Mental Health 1999-2008 30. User involvement is both a legal right and a means to ensure the protection of user needs in care and treatment. The Patient Rights Act further emphasizes a patient’s right to participate in treatment and the right to information (Patient Rights Act, 1999, § 3-1 31). User involvement raises numerous practical, ethical, moral, methodological and philosophical questions (Nolan, 2007). The concept is multifaceted, diverse and presents numerous challenges.
4.7.1 An exploration of the concept of user involvement The transition from hospitals to community-based treatment in which service users’ power is embedded in day-to-day care delivery requires service users to be partners in their own care (Saraceno, 2009). User involvement has been regarded as a measure to ensure more focused, efficient, client-oriented and service-minded health services (Andreassen, 2007). It can be argued that service users’ involvement calls into question the basis of treatment philosophies, norms, rules and service provision (Storm & Davidson, 2010). Participation is regarded as a
30
http://www.regjeringen.no/nb/dep/hod/tema/psykisk_helse/opptrappingsplanen-for-psykisk-helse199.html?id=274864 (Ministry of Health and Care Services 1997-98). 31 http://lovdata.no/dokument/NL/lov/1999-07-02-63
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key feature of the new health reform, the aim of which is to shape health policy and ensure a patient-focused health care system (Pizzo, Doyle, Matthews, & Barlow, 2014). User involvement has been ‘a key aspect of policy making for mental health services globally for the past two decades’ (Storm & Davidson, 2010, p. 111).
The definition of user involvement includes a range of concepts from active participation at the micro-level to service planning and participation in research arenas at the macro-level (Tait & Lester, 2005). The classical ladder of citizen participation proposed by Arnstein (1969) describes eight steps of involvement. The two first steps, manipulation and therapy, describe participation without delegating power. The next levels on the ladder are related to symbolic involvement: informing, consultation and placation. The next three steps describe genuine forms of participation: partnership, delegated power and citizen control (Haukelien, Møller, & Vike, 2011). Participation can occur in numerous forms and according to Arnstein (1969), genuine participation implies a redistribution of power (Rise, 2012). Hickey and Kipping (1998) define user involvement as service users who participate in decision-making processes, building on Arnstein’s ladder when they describe participation as a horizontal continuum from a consumerist approach to a democratization approach. The positions along the continuum are as follows: 1) information/explanation (service providers provide users with information and explanations, but the latter are not included in decision-making); 2) consultation (service providers seek advice from users but do not always use this advice in the decision-making process); 3) partnership (decisions are made in cooperation); and 4) user control (users make decisions) (Hickey & Kipping, 1998). The two latter positions belong to a democratization approach and ‘refer to involvement in decision-making at a community level’ (Hickey & Kipping, 1998, p. 84). The consumerist approach ‘is concerned mainly with increasing the amount of services users have in deciding upon a particular service’ (ibid.). The democratic approach is traced to civil rights and service user movements (Beresford, 2002). According to Beresford (2002), this is an explicitly political approach that prioritizes inclusion, autonomy, independence and self-advocacy (Brosnan, 2012). Tritter and McCallum (2006) suggest that Arnstein’s ladder does not capture the intricate nature of user involvement and argue that user involvement requires dynamic structures and processes legitimized by both participants and non-participants (Tritter & McCallum, 2006, p. 157). These processes must be operated on the health care system, organization, community and individual levels (ibid.).
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According to Storm et al. (2011), Norwegian law has secured participation rights for service users in decisions relating to the design and implementation of health services. User involvement has become a fundamental right in Norway’s mental health service and is typically divided into the individual, healthcare system and political levels. At the individual level, user involvement is defined as participation in the selection, design and use of available mental health services. At the healthcare system level, the concept implies that service users enter into an equal partnership with mental health services and are active in planning and decision making related to treatment throughout the process. User involvement at a political level is defined by an active role in various user groups and organizations related to political processes (Haukelien et al., 2011). The most common type of service user involvement in Norway has been the use of advisory boards with representatives from various user organizations that provide feedback on service delivery, offer recommendations for service development and collect treatment feedback from patients (Andreassen, 2007).
Aspects and definitions of user involvement are occasionally similar and overlapping; however, they also differ (Rise, 2012). Participation is defined differently; as previously discussed, some scholars divide the concepts into degrees of participation (Arnstein, 1969), whereas other scholars regard participation as a continuum that is influenced by service users’ mental state at various points in time (Hickey & Kipping, 1998). In a qualitative study, Lammers and Happell (2003) demonstrate that service users consider participation at any level within the system to be a choice made by the individual based on ability. Thompson (2007, p. 1297) defines participation as ‘co-determined by patients and professionals, and occurring only through the reciprocal relationships of dialogue and shared decision-making’. According to Rise (2012, p. 27), these different definitions offer the impression of a ‘broad, many-sided, complex, and rather blurred area’. In a study by Mathisen, Obstfelder, Lorem and Måseide (2015) that focuses on how user involvement is enabled in practice, user involvement is defined as ‘situational events characterized by relational work, interaction and cooperation as precondition and result’ 32. In this study, we agree with Rise (2012), who notes that the aim of user involvement is to achieve shared decision making between the users and providers of mental health care.
32
Own translation.
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4.7.2 User involvement models Service user involvement is represented in many forms (Basset, Newton, Beales, Collins, & Basset, 2013). There are several approaches to user involvement: the concept is rooted in various theoretical traditions and has various methodological perspectives. Therefore, it can be difficult to provide concrete content for user involvement to service users and healthcare professionals with respect to day-to-day care in psychiatric wards and community mental health centers (Storm et al., 2009). This difficulty has resulted in different models of userinvolvement, including the following: patient participation (Hickey & Kipping, 1998; Thompson, 2007; Tritter & McCallum, 2006), patient-centered care (Montgomery, 2013), shared decision making (Charles, Gafni, & Whelan, 1997; Koerner, Steger, Ehrhardt, & Bengel, 2013), the recovery model (Borg, Karlsson, & Kim, 2009a) and service user leadership (Basset et al., 2013).
Patient participation can be defined as a process in an inpatient mental health context in which patients can be either passive participants or active participants, depending on their mental health symptoms, motivation for user involvement and interest in user involvement (Storm & Edwards, 2013). Patient-centered care includes several dimensions: respect for patients’ values, preferences and expressed needs; coordination and integration of care; information; communication and education; physical comfort; emotional support; involvement of family and friends; and continuity of care (Edgman-Levitan, Daley, & Delbanco, 1993; Montgomery, 2013). Health care should be safe, effective, timely, equitable and patient-centered. It is important both to understand the service user’s experience of illness and to address the service user’s needs within an increasingly complex and fragmented health care delivery system (Barry & Edgman-Levitan, 2012).
Shared decision-making is concerned with ensuring that medical decisions are made in collaboration between service users and health professionals (Clayman, Makoul, Harper, Koby, & Williams, 2012). In a qualitative study that involved both health professionals and service users in the context of shared decision making, Koerner et al. (2013) find that shared decision making is ‘a vital success for internal and external participation’ (Koerner et al., 2013, p. 165). External participation is defined in terms of time, respect, shared decision making, individuality and trust. Internal participation is defined in terms of communication and cooperation, leadership, shared decision making and conflict management. Koerner et al.’s (2013) study primarily focuses on the micro-level (individual service user) and the meso64
level (the individual team members); it does not consider the macro-level (the system level) in detail (Koerner et al., 2013). According to Fukui, Salyers and Matthias (2014), shared decision making is the basis on which service users and health professionals meet. They emphasize the importance of support from significant others (e.g., social workers, peers, and case managers) both before and after mental health treatment. Shared decision making in relation to insight and user involvement will be further investigated in the discussion chapter.
The recovery model extends beyond the aforementioned user involvement models (Storm & Edwards, 2013). Service user involvement is regarded as fundamental to recovery, and mental health services are to be person centered and attentive to the individual’s goals, strengths, hopes and needs. The use of everyday language is central to the development of personal relationships and the promotion of community integration (Borg, Karlsson, & Kim, 2009b; Storm & Davidson, 2010; Storm & Edwards, 2013). Borg et al. (2009a) identify four practical challenges related to user involvement. First, there is a tendency toward collision between the service user’s everyday life and the mental health professional’s medical approach. Second, there is a connection between power and knowledge, and user-based or socially oriented knowledge is difficult for many practice cultures to implement because they ‘are not on the gold-standard list of evidence-based practice’ (Borg et al., 2009a, p. 288). Third, Borg et al. discuss the problems of mentalism and microaggressions (2009a, p. 290). Whereas mentalism is the oppression of individuals through mental health diagnosis, microaggressions are disrespectful and humiliating communications (for example, labeling individuals as treatment resistant and non-compliant). Finally, deinstitutionalization has led to various services and programs. These services may provoke strong associations with former institutions with respect to regulations and degrees of control. There is a need to seriously consider user involvement at all levels, including the micro, meso and macro levels (Storm & Edwards, 2013). Recovery, as a concept and area of knowledge, is understood differently in diverse environments (Borg & Karlsson, 2011). The same is true for the other user involvement models presented in the literature. Basset et al. (2013) find that service users can occupy a leadership role if they are given relevant training and development opportunities. Those authors describe a training program in the UK in which service users are trained for leadership. The service users define leadership as, inter alia, using their experiences to offer advice to other service users, being a proactive member of society, and accumulating knowledge about how leadership operates (Basset et al., 2013, p. 139). Service user leadership can take many forms, and Basset et al. underline that it can range from ‘having more control 65
in your own personal care and day-to-day life to shaping the future of mental health services at a national level and everything that sits between’ (2013, p. 135).
4.7.3 Reflections related to user involvement User perspective and involvement do not represent an individual concept but instead encompass meanings at several levels (Borg et al., 2009a, p. 286). The challenges of user involvement in practice are well known and there remain concerns about the implementation of patient-oriented care (Storm & Edwards, 2013). There is little empirical knowledge concerning the role of user involvement in Norwegian community mental health centers (Storm et al., 2011). In her thesis, Rise (2012) concludes that although respect and decisionmaking are the core principles of user participation in the Norwegian context, there are clearly implementation problems at the system level and concerning outcome measures.
As previously noted, user involvement models have implications for the roles of service users (Storm & Edwards, 2013). According to Volden (2011), a new perspective on the service user is needed. The service user role does not overshadow an individual’s other roles (as an employee, student, mother or daughter). Being a service user indicates only that an individual is currently a user of mental health services, and that role is relevant only while the services are being used. The role of a service user is time limited, and a mental illness no longer precludes participation in society (ibid). The literature has recognized the positive contribution that service users can make to social care planning and development (Carr, 2004). From this perspective, the policy of user involvement can be understood as a result of individuals with mental health problems having organized themselves because they believe that their knowledge is important and that they should be involved in formulating health and welfare services (Alm Andreassen, 2013). Service users have become political actors (ibid). In Norway, Professor Marit Borg et al. have laid a foundation to educate service users who wish to become associate researchers. In this research tradition, the scientist no longer has absolute control over the development of knowledge; instead, service user groups participate in research design and execution (Borg, 2009).
In this thesis, we see user involvement as dependent on the assessment of whether a service user has or lacks insight. This gives us a picture of the centrality and importance of the dialogues between clinicians/professionals and service users in treatment. Our goal is thus to investigate how insight can be performed in dialogue in everyday life to promote user 66
involvement during mental health treatment. Treatment cannot be regarded as existing in a vacuum (Saraceno, 2009), and the surrounding context of insight and user involvement is a vital aspect of the bricolage.
5. Aims This study’s overall aim was to explore service users’ insight into mental illness and mental health treatment, along with their experiences of how insight affects user involvement, relationships with others and general life situation.
Insight is a precondition for valid consent and consequently, for user participation (Appelbaum, Appelbaum, & Grisso, 1998; Beauchamp, 2003; Lorem et al., 2014). If health professionals fail to recognize or understand the insights service users express about own suffering and life situation, it will influence the possibilities to activate the service users’ perspective and involvement in treatment. We recognize the complicated and ever-changing social contexts within mental health services. This study focuses on how insight can affect individual treatment in everyday life during admission. Our intention is to provide knowledge to support approaches that help recognize and utilize the service user’s perspective in mental health practice.
It is a core idea of this project to uphold and develop insight into a relational concept. By exploring service users’ stories about experiences, evaluations, needs and self-identity, we wanted to analyze that which characterizes service users’ insight and how dialogue as a source can recognize this insight. We hope that a new perspective on the concept of insight will guide us to new and varied methods of activating user involvement both in community mental health centers and in mental health in general.
The overall research questions for the study were as follows: •
What understanding do service users have of their mental illness and treatment? What aspects of service users’ life situations are important for other individuals to understand?
•
What experiences have service users had concerning interaction and involvement in treatment? How are these situations interpreted when the service user either is involved or chooses not to be involved? 67
•
What does it mean for an individual service user to lack insight?
The study’s articles highlight the research questions in different ways and underline not only the combination of insight and user involvement but also the changing social contexts within mental health services.
Article 1: The study’s primary goal was to explore the process of insight by analyzing service users’ narratives. Through a case study, we intended to explore how stories are reflected and shaped by the relationship between the interlocutors. The main question is whether using a performative narrative perspective enables a relational concept of insight and thus is something that is developed in the dialogue instead of through the static characteristics of the patient.
Article 2: This study’s goal was to contribute to our knowledge of mothers diagnosed with a mental illness and their experiences of admission for mental health treatment. A central part of user involvement is connected to admissions and opportunities to express these users’ treatment wants and needs. We discuss how mothering by women diagnosed with mental illnesses is created within the discourses of good motherhood and how clinical practice can be improved to activate these mothers’ insights into their situation.
Article 3: This study’s goal was to contribute to the understanding of user involvement in mental health care. Both users and professionals must make many decisions about treatment and care either during admission or while in outpatient care. This article examines service users’ experiences of being involved in shared decision making while admitted to a community mental health center or in outpatient care organized by the community mental health center.
6. Methods The thesis is based on the narrative analyses of 25 interviews (and 1 pilot interview) with service users in three community mental health centers in Norway’s two northernmost counties. The following chapter presents the three Northern Norwegian community mental health centers, the recruitment process, and the participants. I write about the interviews 68
before I offer an impression of the co-constructed stories. The narrative analyses conform to the theoretical framework used in the study and present the analysis used in the articles upon which this thesis is based. This includes narrative context analysis and thematic analysis. The selection of stories is described. The ethical approach of the project is described and I give some thoughts about narrative as ethics. Finally, I thoroughly present some of my methodological and ethical reflections during the research process.
6.1 The three Northern Norwegian community mental health centers The 14 community mental health centers in Northern Norway cover 87 municipalities. Broad evidence reveals that community mental health centers in the north differ from the rest of the country with respect to their organization, professional services, specialist coverage, professionalism and quality, resource allocation, collaboration with local authorities and dimensions (Vorland, 2009). We chose to conduct our study in three community mental health centers in Northern Norway because little research in this area has asked service users to tell their stories of being admitted to community mental health centers in the region (Storm et al., 2011). The three centers cover 18 municipalities 33. The three centers were inpatient wards with 15, 10 and 6 beds, respectively, at the time of the interviews. The centers also offered outpatient services and planned admissions. Although the units were approved for voluntary treatment under the Mental Health Act 34, two of the centers could also accommodate involuntary service users, i.e., they offered ‘coerced psychiatric care without overnight’ 35,to users for whom the psychiatric hospital in the region was the responsible decision maker. Coercive measures were not allowed in any of the centers. In addition, service users were offered crisis intervention, observation and assessment, treatment, milieu therapy, medication, and follow-up after an intox /suicidal act. Although there were differences in the centers’ emphasized specialties, all three emphasized treatment-related clarification and stabilization in an unclear and difficult period, when monitoring and evaluation may be especially important for the future health care of the individual service user. All three community mental health centers are located in rural areas and the study participants all lived in smaller municipalities. If the participants were to be admitted to the region’s psychiatric hospital, most of them would be far from home.
33
An area of the same size as the Republic of Serbia; approximately 77,000 sq km. Lov om Psykisk helsevern. 35 Tvang Uten Døgn. 34
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6.2 Recruitment The study’s focus on user involvement and insight were reflected in the inclusion criteria: the service users had experienced considerable changes during their lives because of a mental illness, they had been acutely admitted to a psychiatric hospital 36 and they were able to provide informed consent.
The recruitment of the study participants began after receiving formal approval from the Regional Committee for Medical and Health Research Ethics (Reference no.2011/775, Appendix 1 a-c). We contacted three community mental health centers and presented the project over the telephone. Their responses were all very positive and we had a dialogue meeting with each center. The professionals emphasized the importance of research that focused on the service users’ stories and experiences and were deeply committed to promoting user involvement. They were also interested in practice-oriented research that could be valuable to their practice. All three centers decided to participate in the study and received information about the project (Appendix 2).
The participants were recruited through a local research assistant at each center. The local research assistant orally presented the study to potential participants at each community mental health center. The local research assistants were familiar with the inclusion criteria for the study and selected the participants who would be invited to participate. Information letters were distributed and interested individuals signed letters of consent (Appendix 3). These letters were retained at the centers until I arrived to conduct the interviews. Before this point, the participants had the option to withdraw from the study if they changed their minds 37; in addition, they could ask questions about the project. Prior to conducting the interviews, I read the informed consent document with the participants and reconfirmed that each individual still wished to participate in the study. I also explained the research focus of the study again and asked whether the individuals had questions before we began the interviews. The individuals were aware that I was a researcher from the UiT/The Arctic University of Norway, and some participants asked whether I was a doctor. When I informed them of my background (as a family and network therapist), they had no reaction. Each service user was permitted to bring someone with them to the interview, including a professional from the community mental
36
One participant had never been admitted to a psychiatric hospital; however, she wished to participate in the study. Thus, we included her. 37 The participants could also withdraw from the study after their interviews.
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health center or someone with whom they felt safe (a friend or a family member). I conducted one interview with each service user.
6.3 The participants Initially, 29 individuals agreed to participate in the study. At the first center, I conducted 12 interviews with 3 men and 9 women. At the second center, I conducted 10 interviews with 6 men and 4 women. At the third center, I conducted 7 interviews with 3 men and 4 women. One elderly woman who contacted me after I left the second center. She was an outpatient there, had heard about my project and wished to participate. I subsequently decided to interview her and we met at her sister’s home several months later. Overall, I conducted 30 interviews 38. The participants represented a heterogeneous group with various stories related to their experiences as service users. The participants’ mental illnesses had manifested at different stages of life and they expressed diverse, individual needs for assistance related to their everyday lives. As noted above, I excluded five interviews from the transcription and analyzes. Table 1 includes only participants whose interviews have been transcribed and analyzed. To attend to the individual participants’ anonymity and act in accordance with necessary ethical considerations, the participants are not presented in further detail than that which is presented in Table 1. It is important to mention that the participants in the study are from small communities, and recognition would be possible if each participant’s age, gender, sociocultural affinity, etc. were stated.
Table 1.
Men
Women
Participants
9
16
Age
30-64
19-87
Troms county
3
8
Finnmark county
6
8
38
If the pilot interview is included, I conducted 31 interviews.
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Marital Status and children
Married: 0
Married: 0
Married with children: 1
Married with children: 5
Partner: 0
Partner: 3
Partner with children: 0
Partner with children: 3
Single: 5
Single: 2
Single with children: 2
Single with children: 2
Uncertain relationship status: 1
Uncertain relationship status: 0
Widower: 0
Widow: 1
Language 39
9 Norwegian
16 Norwegian
In work /or in various programs 40
Working full time: 1
Working full time: 3
Working part-time:
Working part-time: 2
In programs from The Norwegian Labor and In programs from The Norwegian Welfare Organization 41/or receiving Labor and Welfare Organization 42/or disability benefits: 7 receiving disability benefits: 6
Age when first time admitted
Student/interrupted studies:
Student/interrupted studies: 3
Retired:
Retired: 2
Does not say: 1
Does not say: 2
Age 20-25:
Age 15-20: 4
Age 25-30:
Age 20-25: 1
Age 30-35: 3
Age 25-30: 2
Age 35-40: 1
Age 30-35: 2
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The participants were not asked about their nationality/origin. As researchers know, questions about ethnicity/identity can be sensitive topics; for instance, claiming a Sami identity can be complicated for some in Northern Norway (Blix, 2013). As seen from Table 1, all the participants spoke Norwegian during the interviews. Although the Russian woman and the Finnish-Sami woman were both offered interpreters, they wanted to speak Norwegian. 40 Some of the participants both received disability benefits from The Norwegian Labor and Welfare Organization and were working part-time. 41 NAV in Norwegian. 42 NAV in Norwegian.
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Age 40-45: 1
Age 35-40: 1
Age 45-50:
Age 40-45:
Age 50-55:
Age 45-50: 1
Age 55-60:
Age 50-55:
Age 60-65: 1
Age 55-60:
Do not remember: 3
Age 60-65: 2 Do not remember: 3
Own reason for the first contact with mental health services 43
Exhaustion/struggling mentally: 1
Exhaustion/struggling mentally: 2
Depression: 3
Depression: 4
Anxiety: 1
Anxiety: 1
Attempted suicide/suicidal: 2
Attempted suicide/suicidal: 5
Psychosis: 1
Psychosis: 4
Drug/alcohol abuse/overdose: 2
Drug/alcohol abuse/overdose: 1
Breakdown:
Breakdown: 1
Sexual abuse:
Sexual abuse: 1
Victim of domestic violence: 1
Victim of domestic violence: 1
In need of help:
In need of help: 1
Divorce/problems in relationships: 1
Divorce/problems in relationships: 1
Lost custody:
Lost custody: 1
Hearing voices: 1
Hearing voices: 1
PSTD:
PSTD: 1
Somatically sick:
Somatically sick: 1
Request from doctor: 1
Request from doctor:
Do not remember: 1
Do not remember: 2
43
The participants provided their own reasons for the first time they were admitted; many participants had several explanations. This resulted in 2-4 descriptions for some individuals.
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Admitted to a community mental health center
5
5
Outpatient services at a community mental health center
3
9
Not in need of treatment at the time of the interview
1
2
Own definition of mental illness 44
Depression: 4
Depression: 7
Suicidal: 2
Suicidal: 5
Psychosis: 0
Psychosis: 2
Bipolar: 0
Bipolar: 2
Anxiety: 3
Anxiety: 5
Posttraumatic stress disorder: 1
Posttraumatic stress disorder: 3
Schizophrenia 2
Schizophrenia: 0
Personality disorder: 1
Personality disorder: 2
Hearing voices: 0
Hearing voices: 1
Drug/alcohol related: 4
Drug/alcohol related: 4
Paranoid: 1
Paranoid: 0
Somatically sick: 0
Somatically sick: 2
Losing custody/divorce/sexual abuse/family-related matters: 1
Losing custody/divorce/sexual abuse/family-related matters: 5
Other: 1
Other: 1
44
The participants provided their own definitions of their mental illnesses and many participants had several descriptions /diagnoses. This resulted in 2-4 descriptions for some individuals.
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6.4 The interviews Before I began the interviews, I decided to conduct a pilot interview. Consistent with a more reflexive approach to qualitative research, pilot interviews can be highly useful in ‘foreshadowing research problems and questions, in highlighting gaps and wastage in data collection, and considering broader and highly significant issues, such as validity, ethics, representation and researcher health and safety’ (Sampson, 2004, p. 383). Although I had previously developed an interview guide with my supervisors, I wished to try it out and discuss it with someone who had service user experience. I contacted two user organizations for service users; a woman from one of those organizations wished to be a consultant on the interview guide. We conducted a pilot interview over the telephone and she answered my questions. We also had a conversation after the interview and she wrote down additional thoughts. She felt that the interview guide lacked certain themes, such as coercion and medication. I agreed with this observation but believed that these themes deserved greater space in another thesis. Following this woman’s advice, the interview guide (Appendix 4) became more oriented toward open questions, and her suggestion of opening the interviews with the question “Can you tell me what brought you to psychiatric services?” appeared to elicit more detailed stories. The open questions were designed to elicit a narrative account (Thornhill, Clare, & May, 2004). The interviewees were invited to speak as freely as possible. I did not strictly adhere to the semi-structured interview guide, but for each interview, I ensured that we discussed the study’s main themes. The interviews differed substantially; some respondents told long stories about their experiences as mental health service users, whereas other respondents required more assistance. Some told several stories, others told fewer. Each new research interview represented new stories, a new storytelling (Klausen, & Haugsgjerd, & Lorem, 2013). The interviews had three main areas 45: 1) the service users’ insight into their own health and treatment, 2) the service users’ experience of involvement in treatment, and 3) what it can mean to lack insight. These areas are connected to the study’s research questions 46.
The interviews were conducted from September to December 2011. Most of the interviews were conducted at the community mental health centers. Six interviews were conducted at participants’ homes (or, in one case, at the home of the participant’s sister); those interviews 45 46
See the Interview Guide, Appendix 4. See section 5, Aims.
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had a different character from the 20 interviews conducted at institutions. Coffee and cake were served, family photographs were shown, and I met several family members (children, spouses, cats and dogs that the participants wished me to meet). These interviews were conducted in a more personal setting and I was often asked where I came from, whether I had a family and children and if I had ever been to the area before. One interview was conducted at a public office, 1 interview was conducted at the office of a voluntary organization and 2 interviews were conducted over the telephone. This last option was exercised because of both geographical distance and the participants' wishes. The interviews conducted at the community mental health centers were characterized as more akin to a ‘therapeutic/treatment meeting’ because most of the interviewees expected it to last for 30-45 minutes (which these types of meetings often do) and they were conducted at the treatment site. The interviews conducted in homes lasted longer. All interviews were digitally recorded. The taped interviews lasted 8-80 minutes. However, each meeting was longer than the recording; I did not begin recording until everything was ready and the participant wished me to do so. Before each interview, I also discussed the letter of consent with the participant to clarify the issue of informed consent to confirm that he or she still wanted to participate.
All interviewees were allowed to bring someone they trusted if they wished, and 13 of the participants brought their contact person with them (i.e., the one person who is primarily responsible for the individual service user at a community mental health center and coordinates various meetings in which the service user participates as an aspect of treatment). To some participants, bringing someone appeared important; for other participants, it had a more practical purpose. Toward the end of each interview, I asked the interviewees whether they wanted to discuss something that I had not asked them about. I also invited them to elaborate on how they had experienced the interview. All interviewees expressed satisfaction with the interview process and promised to get in touch afterwards if they had anything to add or otherwise desired contact.
6.5 The analysis After each interview, I wrote field notes on my impressions during the interview, how contact with the informant was established and the feelings I had throughout the interview. I also wrote details about each participant to ensure that I would remember each of them when I began working with the material. I noted whether they had children, their age and whether something special transpired during the interview (for example, a kitten lay on the tape 76
recorder for more than an hour at one location; in an interview at an interviewee’s home, I met the interviewee’s 9-year-old son, and in a third case, we conducted the interview in a Red Cross building). These field notes were very helpful both during the transcription process and in the subsequent analysis. They assisted me in ‘putting myself back’ into the interviews.
One important step in the analysis is transcription. I transcribed all interviews verbatim (with the exception of the aforementioned five interviews 47) and included, for example, deep breathing, coughs, dogs barking or other interruptions. The transcription focuses on the interview as a social co-construction between teller and listener(s), and it was important for me to write all this information down as closely as possible to how it had been said (for example, I retained slang or Northern Norwegian expressions and dialect if I found them necessary to understand the meaning). When writing the articles in the project, we translated the transcripts from Norwegian to English as closely to verbatim as possible. The transcription of the recordings followed these principles: ‘…’ indicates a pause of two-three seconds; ‘( )’ indicates an explanation from the interviewer; ‘(…)’ indicates that some text in the interview is excluded; ‘-‘ indicates a cut-off; and ‘[…..]’ indicates a clarifying comment from the interviewer/first author. When uppercase letters are used, the interviewee emphasized the word.
From the beginning, this project employed an interesting social constructionist approach to stories concerning the experiences of being a service user at a community mental health center in Northern Norway. While working with the stories, it also became clear that the study focused on stories as co-constructions in context. Three important issues received particular consideration in the analyses concerning understanding the narratives as dynamic stories: •
The representation of written, spoken or visual symbol systems indicates that stories are always uncertain and changeable (Josselson, 2011b). They are distanced from the events they describe; they have multiple meanings and are never told the same way twice.
•
The interaction between storyteller and listener (and other audiences, ghostly or present 48), i.e., the interviewer and interviewee, is always present and is what coconstructs the story (Squire, 2008, p. 41).
47
See section 1.6, What is not included. ‘Ghostly audiences’ are those persons central to the lives of the research participants (Langellier, 2001), ‘for whom the story may be being told’ (M. Andrews, 2007). 48
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•
There is a relationship between the stories that people tell about their lives and the surrounding dominant narratives that form the contexts of those stories (Andrews, 2007).
In a social constructionist approach to research, the analysis is not understood as a linear process but instead is present during all stages of the project (Kvale, 1996). In our study, we defined the analysis as a recursive process (Braun & Clarke, 2006). The methods of narrative analyses were not selected before we began to read and reread the transcribed interviews, thereby relating them to the primary topics of the study. Stories always relate to something. As researchers, we contribute to the process at every level, and subjectivity is always a part of what we are researching (Andrews, 2007). We wished to emphasize the importance of not treating the service users’ stories as mere expressions of illness and/or loneliness. More than half of individuals who suffer from severe mental illness are lonely (Perese & Wolf, 2005). Loneliness is considered a personal experience (de Jong-Gierveld, 1987), and individuals with mental health problems often experience ‘shame and a fear of exclusion in their struggle to become integrated in the community’ (Granerud & Severinsson, 2006, p. 288). We wished to connect the participants’ storytelling to the surroundings and contexts in which they live and to which they relate. Norwegian mental health services are subject to ongoing change as a result of deinstitutionalization, and relating the analysis to the dynamic processes in which both the communities and the participants are participating became vital. Therefore, we chose to focus on stories as co-constructions in context.
The importance of context is crucial to ‘the construction, communication, and understanding of individuals’ life stories’ (Zilber et al., 2008, p. 1048). The contexts enter the interviews in a complex choreography and are placed in the space between the interviewee and the interviewer, between telling and setting, between reader and text and between history and culture (Riessman, 2008). The interview setting is also a type of context that shapes the stories that are told. Narratives of personal experiences are regarded as crucial to obtaining a rich and nuanced understanding of social phenomena, and the contextual embedding of narratives shapes and reshapes the stories that are told (De Fina, 2009). The contextual frame enables a different understanding (from the medical understanding) of service users’ narratives, which makes researchers, interviewers, listeners, therapists or professionals important components in the ongoing dialogue and storytelling surrounding mental illness. We are often challenged by
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dialogues that do not conform to the medical understanding of an illness. The stories and their variations of meaning led us to two different narrative analyses.
6.5.1. An impression of the co-constructed stories When performing narrative research and interpreting interviews, researchers begin with narrators’ voices and stories, thereby extending the narrator-listener relationship and the active work of listening in the interpretive process (Chase, 2005). According to Chase (2011), this is a move away from the more traditional theme-oriented analyses in qualitative research. Instead of locating distinct themes across the interviews, narrative researchers first listen to the voices in each narrative (Chase, 2011; Riessman, 2008). This is what I did when I started to work with the interviews. I paid close attention to both the content of the stories and how the narrators spoke. By doing this, I could also hear the influence of dominant narratives on narrative practice (Chase, 2011). Here I provide an overview of the co-constructed stories in the study to give the reader an idea of the participants’ concerns about the following themes that were relevant to several of the stories: •
Their first meeting with mental health services /being admitted to mental health services;
•
Different life events that had made a difference/seeing life events as causes of mental illness;
•
Their families and network (children, if they were parents);
•
A wish to be seen as not primarily a patient;
•
The community where they lived/the reactions to the mental illness that they experienced (stigma);
•
Their diagnosis from the professionals and their reactions to those diagnoses;
•
Their wish be seen and heard by the professionals;
•
Medication issues;
•
Drug/alcohol abuse, electroconvulsive therapy (ECT) treatment, hallucinations, hearing voices, suicide attempts;
•
The suffering that the mental illness entailed, loneliness, being misunderstood, being mistreated, anxiety, being afraid, depression; and
•
Being able to make treatment decisions.
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By looking at these themes, I hope the reader obtains an impression of the very rich and detailed material that lies within the 25 interviews. Although I have given some more or less common themes to the reader, I emphasize that each interview, each setting represented an interactional context for storytelling (De Fina, 2009; Riessman, 2008). Each story represented the individual service user’s meaning making (Josselson, 2011b). There are as many different stories in the material as there are interviewees. Each service user told her/his story to the researcher (and for some, the contact person at the community mental health center also participated); each story was unique.
6.5.2 The selections of stories As a narrative researcher, one participates in the creation of stories instead of ‘finding’ them in the data (Blix, 2013; Riessman, 2008). I have participated in the creation of the narratives in this study in more than one way; I have formulated the research questions and set the stage for the interviews. I have engaged in a dialogue with the participants during the interviews, I have transcribed the material, and I have acted as a writer and reader of the text for further analysis (Blix, 2013). I have reconstructed the told from the telling (Mishler, 1995) and in the work with the stories told, I made choices about which narratives to analyze more thoroughly. This is a crucial task in narrative analysis (Blix, 2013; Josselson, 2011b). I based my judgment on what was learned during the research process. The interpretation and discussion of the 20 stories chosen for analysis in this thesis is based on the knowledge developed through engagement with all the service users in the study. The stories chosen for analysis ‘were
not chosen because they were considered particularly representative of the sum of the
interview material, but instead because of their particular distinctness and clarity’ (Blix, Hamran, & Normann, 2013, p. 268) with regard to insight and user involvement.
So why did I conduct 30 (31) interviews? When the study was designed, and even at the time of the interviews, I had still not chosen which narrative approach to work with when I was going to interpret and analyze the stories told. I decided to work with an explanatory approach to the interviews and stories. By working on the collection of stories, co-constructing narratives with the participants, I agree with Bruner, Sarbin and Polkinghorne (2011, p. 66) that narrative work ‘is conducted within a postmodern frame in which knowledge is constructed rather than discovered’. This includes thinking about methodology as inquiry, as modes of exploring questions and creative approaches to offer my constructed findings for an
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audience (ibid.). I found 20 stories in my study that were particularly interesting in connection with my research questions.
6.5.3 Narrative context analysis: the zoom model Insight is the core concept of user involvement and determines the treatment of a service user being admitted to mental health services. As the first research question, we decided to examine the material for stories about insight. We searched the interviews for specific stories. One interview was closely related to the topic. We decided to conduct a case study to analyze that interview, with a man in his mid-50s, which we intensively read and reread.
The case story was analyzed through narrative context analyses inspired by Zilber et al. (2008) and Pamphilon (1999). The participant’s storytelling was understood as a performative narrative, and a zoom model was used to analyze the various levels of meanings. The interview situation was analyzed in relation to intersubjective relations, the social field and cultural metanarratives. This article focuses on what it means to lack insight. We understood the topic to be relevant to the significance of understanding one’s own life situation and the aspects of one’s life situation that the individual service user wants others to understand.
6.5.4 Thematic analysis: motherhood and mental illness We began by searching the material for narratives connected to belonging or resistance in relation to the mental health services context; during the course of this search, however, we discovered something else. When reading and rereading the interview transcripts, we found ten mothers among the participants. Reflections on these mothers’ narratives offered me a new direction, and we analyzed those narratives in relation to the dominant discourse on motherhood. Using an experience-oriented thematic analysis inspired by Riessman (2008), each interview with the mothers was analyzed, and we isolated and ordered relevant episodes into different themes. After having done this with the ten interviews, we sharpened our focus and identified common themes among the stories. The analysis was driven by the data, which we did not attempt to fit into a preexisting code or any analytical preconceptions (Klausen, Karlsson, Haugsgjerd, & Lorem, 2015). The mothers’ experiences were the primary focus of this analysis. We found dominating themes that were common to the interviews, which were presented as four main themes. The mothers related their stories to admissions and the ripple effects of admissions and in this way, we understood the topic to be relevant to the
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significance of interaction and involvement in treatment, understanding one’s life situation and the aspects of their life situations that they want others to understand.
6.5.5 Thematic analysis: shared decision making in context The second research question focuses on the concept of service user involvement, which is both a legal right and a means of ensuring the protection of a service user’s needs for care and treatment. The concept is more related to processes than it is a tool or manual for psychiatric treatment (Myhra, 2012). By defining the concept using a more process-oriented approach within a social constructionist epistemology, we searched for interviews in which we could regard user involvement as something being done in the interview. We used Riessman’s experience-oriented thematic analysis in this article, focusing on story content. We worked with one interview at a time, isolating and ordering the relevant user-involvement experiences into different contexts. After performing this task with 25 interviews, we sharpened the focus and identified shared decision making as essential in four contexts. We included excerpts from nine interviews in the article; these excerpts were related to the complexity of practicing shared decision making in mental health services.
6.6 Ethical mindfulness The study was approved by the Regional Committee for Medical Research Ethics (Reference no.2011/775, Appendix 1a-c). Interviews were limited to individuals who were capable of providing informed consent and who had experienced one or more psychiatric hospitalizations. One study participant had never been hospitalized, but we decided to continue the interview and allow her to participate.
Guillemin and Gillam (2004) present two ethical dimensions within qualitative research. The first dimension is procedural ethics and describes which ethical guidelines to address in health research. The procedure for applying to the Regional Ethics Committee for approval of the project addresses this dimension and demonstrates that the researcher is ethically justifiable according to the law and the Helsinki Declaration. The researcher's knowledge of national and international laws and regulations is therefore the subject of this section. The second dimension is, according to Guillemin and Gillam, the practical-ethical dimension. This dimension describes everyday ethics, namely, situational ethics, which addresses unpredictable events that may arise in the field. These important moments, when the researcher is challenged to make decisions with ethical repercussions, need not be major 82
dilemmas (ibid.). An example of this situation is whether we follow up with a study participant who describes difficult experiences during the interview that are outside the project's focus areas. Ellis, a sociologist, adds a relational ethical dimension to qualitative research. This dimension recognizes and appreciates mutual respect and dignity and the links both between the researcher and the research field and between the researcher and the community in which she lives and works (Ellis, 2007).
The basic principles of human research are respect for individuals, the avoidance of harm and the demonstration of justice. Based on these principles, topics such as informed consent emerge, ensuring that any inconvenience is outweighed by the benefits of participation, the selection of study participants is ethical and there is an honest presentation of research findings (Guillemin & Heggen, 2009). What is the result when these principles encounter everyday ethics? This question brings us to ethical mindfulness. Ethical mindfulness can be said to satisfy five features (ibid.). The first function is to recognize the role played by ethically important moments in everyday research. The second function is, as scientists, to be prepared to accommodate a sense of unease in a situation. Something might be bothering the study participant during the interview, and it is important to reflect on what this factor might be. Occasionally, this feeling reveals ethical dilemmas in research. Third, Guillemin and Heggen state that ethical mindfulness requires the researcher to articulate what is ethically important during the research process (Guillemin & Heggen, 2009). To be able to do so, one must be familiar with the basic principles of health research, namely, the procedural dimension. The fourth feature concerns reflexivity. One must be aware of one’s role in the research, particularly in relation to study participants. Being ethically mindful, the researcher reflects on his or her role throughout the research process, carefully scrutinizing what he or she says and does and reflecting on the potential interpretations and consequences of these actions (Guillemin & Heggen, 2009). Ethical mindfulness requires courage in the sense that it requires a new way of thinking about ethics. Everyday ethics must be taken seriously; one must be able to work against established patterns in research ethics (ibid.). When ethics are involved, it is essential to be aware of ethical research principles.
6.7 Narrative as ethics Narrative ethics is a generic term for various approaches that share the notion that there are connections and similarities among the narrative form of language and human experience, life history and identity (Hovland, 2011). According to Newton (1995), narrative as ethics defines 83
the ethical consequences of narrating a story and the reciprocal claims that bind the teller, listener, witness, and reader. There is an ethical ‘here and now’ in this perspective; even as a reader, one participates in narrative ethics. Newton relates narrative as ethics to immediacy and emphasizes that an individual faces a text as one might face a person; this immediacy gives rise to claims (ibid.). The narrative act is regarded as narrational ethics and a dialogic system of exchanges among tellers, listeners, and witnesses. ‘Life-turned-into-story’ describes the representational ethics involved in the distance between an individual and character; ‘the gains, losses, and risks taken up when selves represent or are represented by others’ (Newton, 1995, p. 18). The ethics of reading this thesis and thus participating in the study as a reader of and a listener to the interviewees’ stories, and one’s interpretations of them, places the individual into an ethical ‘here and now’ perspective.
6.8 Methodological and ethical reflections through the research process In the creation and conduct of this study there were many challenges, both expected and unexpected. According to Finlay (2002), the process of reflection should begin at the moment the research is conceived. Some ethical challenges were connected to obtaining informed consent, recruiting participants through research assistants at the community mental health centers, participating in the storytelling during the interviews with care and ethical awareness, omitting to include all the interviews in the analysis, and asking questions related to the unexpected.
Things rarely go as planned all the time. I decided to interrupt two of the interviews and not to finish them. One participant appeared not to understand the context or purpose of the interview, and the research assistant from the center agreed that the participant lacked a cognitive understanding of the principal framework of the project. The other participant proved to be clearly intoxicated by illegal drugs and made latent threats during the interview. The latter individual would not have been able to participate even if a valid letter of consent had been signed. I thanked him for his participation 8 minutes after we began. Both of these interviews were terminated in a considerate manner, and we talked for a while after I stopped the recorder. These interviews were not transcribed or analyzed 49, but they contributed to the overall impression of the study. Informed consent ‘represents a cornerstone of ethically acceptable health care research’ (Hem, Heggen, & Ruyter, 2007) and can be said to be
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The interviewees are still included as study participants.
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process oriented, with a constant need to be discussed and updated in studies. In this case, both of these interviewees wished to speak with me and participate in the study, but I found it difficult to perform the interviews because I considered them not capable of giving consent. According to Hem et al. (2007, p. 51), ‘researchers must take continuous responsibility for assessing what is in the best interest of patients. The assessment is demanding and has no standard solution. Good research judgments are needed and this must be exercised in the context of each situation’.
Three of the interviews were conducted with the aid of an interpreter who was present via telephone. I was not prepared at all for the fact that three of the participants were refugees. They wished to speak in their mother tongue, and the community mental health center facilitated the use of interpreters. It felt important not to exclude these service users from the study because they wanted to participate. I experienced these interviews as particularly challenging but very rewarding. These interviews were not included in the analysis 50.
Because this study took longer than planned, it was necessary to ask the Regional Ethics Committee for an extension 51. The extension involved data storage, which the Regional Ethics Committee approved under the assumption that all participants had been informed. This decision was obtained immediately.
Reflections related to methodology and ethics are essential to all research, and I have chosen to focus on some challenges concerning co-construction in the research process 52. By making this selection, I exclude other topics that some readers will consider more important and necessary to discuss. However, this exclusion is part of the ‘bricolage’ within qualitative research (Denzin & Lincoln, 2013); we read in our understanding of the basis of what we see. We see different things based on our knowledge and understanding of the field that we are investigating.
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See the introduction chapter. I have chosen not to use the material from these interviews because of the study’s limitations. They still constitute a part of the interview material and are a part of the study I wish to interpret and work with in another setting. 51 Appendix 1 b 52 Further reflections concerning the methods used in the study will be discussed in chapter 8.
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6.8.1 Recruitment: constructing the service users When we designed the study, we decided that there would be three inclusion criteria for participants: 1) the experience of being admitted to a psychiatric hospital; 2) a mental illness that had caused serious changes in the service user’s life; and 3) consent to and an understanding of the risks, benefits, and potential drawbacks of participation in the project. By identifying research participants that met these criteria, we were constructing service users who conformed to our assumptions and the definition of requiring mental health services. We had a research assistant at each community mental health center choose who to ask to participate in the study. These research assistants chose people who matched our inclusion criteria. Is it possible that this selection process was what made the narratives of the service users meaningful?
Participant selection is a necessary step in all research. We identified the participants, and they identified me, the interviewer, as a certain type of person (Karlsson & Pérez Prieto, 2012). It is difficult for individuals who lack experience to understand how it feels to be in need of mental health services. In a qualitative study of treatment experiences in eatingdisordered patients, Malson et al. (2004) focus on how both patients and health care workers constructed ‘the eating disordered patient’. They find that patients frequently shifted through multiple, often contradictory, positions in relation to their diagnosis and treatment. I recognize the same phenomenon in the interviews with the participants in our study. One of the participants, Karin, shifted between being in need of treatment and regarding treatment as a burden. She positioned herself as a service user, a depressed woman, a single mother, and an independent and struggling person who felt stigmatized in the community as a former drug addict. A single ‘construction’ of Karin (or any of the service users whom I interviewed) is not possible; the concepts from Josselson (2011b) and Bakhtin et al. (1986), as previously discussed, are again relevant: multi-layeredness, multi-vocality and unfinalizedness are aspects of how we perceive and attempt to understand the other individual in front of us.
The service users I interviewed all related their various positions (i.e., as service users, parents, siblings, and members of the community) to their broader surrounding contexts. One of the strengths of our study is the multi-vocality of all the personal stories; I consider it more difficult to produce such multi-layeredness in larger, quantitative studies.
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The anthropologist Estroff’s ethnographic study ‘Making it Crazy: An Ethnography of Psychiatric Clients in an American Community’ (1981) investigates the sociocultural forces that influence the biographical experiences of individuals with mental illness. Estroff’s detailed study reveals that when service users satisfied institutional rules and restrictions, the consequence was the affirmation of their identities as ‘crazy’ (Karp & Birk, 2013). According to Karp and Birk (2013, p. 25), this finding demonstrates that the dichotomy of mental illness as either a human construction or independent illness is false; mental illness must be regarded as both ‘an independent reality and a social product’ (cf. Geertz, 1973). This is another argument for performing a contextual analysis of the narratives in this study. My assumptions of what it means to be a service user might be characterized by certain regularities in the stories that concern the experience of coping with mental illness. Nevertheless, I also had to be aware of the diversity of the service users I interviewed. To me, all the participants appeared as very different individuals; the main characteristic that they had in common was their current need for mental health services.
Ethics were often at stake in the study. There were demanding stories of offenses, assault, coerced treatment and medication, drugs and violence. These stories required vigilance and a presence of mind concerning which specific topics to focus on and which should be left behind. It was important to participate in the storytelling during the interviews with care and ethical awareness as a researcher. The participants were assured of confidentiality; nearly all participants told me that they wanted other individuals to hear their stories and that they were not concerned with anonymity; they wished to tell their stories. We nevertheless decided to anonymize names, ages, living arrangements and the community mental health centers to which the participants belonged. Informed consent was ensured prior to each interview. At the end of each interview, the participants were asked about their experience in participating in the study. They were also reminded that they could subsequently contact me (the interviewer), and I provided contact information. They were reminded that they could withdraw from the interview; participation was voluntary and they did not need to explain why they withdrew if they wished to do so. Two women were ambivalent about whether to participate, but they both decided to do so. In both cases, we discussed their ambivalence for several minutes and I reassured them that it was their decision about whether they wished to be interviewed.
Several participants emphasized that they appreciated participating in a project that ‘wanted to hear their stories’ and ‘listen to service users’ experiences’. During or after the interviews, 87
some of them expressed their beliefs that the study was important and it was ‘about time’ that someone listened to them. This observation demonstrates that ethics are deeply involved in this project even after the thesis has been completed. The interviewees expected something to ‘happen’ and change in the mental health services field once their stories and experiences were heard. How do we as scientists meet these types of expectations in an ethical manner?
6.8.2 Constructing the researcher Becoming a researcher has not been an easy or uncomplicated journey. As a former teacher and a family and network therapist, I have worked with many people throughout the years. In my earlier work, emotions were an important guideline in my practical work with children, youths and adults. That said, does research in academia include emotional work?
There is a strong association between science and objectivity that is consistent with the understanding of emotions as impediments to the research process (Bellas, 1999). Subjective emotions do not belong in academia, and emotional aspects involved in research processes appear to be ignored (ibid.). More recently, research has highlighted the importance for qualitative researchers to assess the impact of their research on not only the participants but also themselves (Dickson-Swift, James, Kippen, & Liamputtong, 2007). According to Dickson-Swift et al. (2007), qualitative researchers must pay attention to the emotional work of researching from the smaller details to the larger steps in the overall process. I sometimes found the interviews in my study challenging. I did not know whether I performed well in the interviews. There were days when I felt exhausted and lonely. I was frightened of doing more harm to the participants’ situations and ashamed that I did not know more about each individual. I was not acting as a therapist during our conversations; I was there to conduct research. I would most likely talk with these persons on only one occasion. It felt difficult not being able to offer hope during the interviews. The importance of being ready for the unexpected is rooted in constructionist approaches, which focus on contextual interrelations in the construction of narratives (Esin, Fathi, Squire, & Lick, 2013). The relationship between interviewer and interviewee and the relationship between the broader cultural and historical context is what constitutes the particular circumstances of each research project (ibid.). When I felt uncertainty while conducting the interviews, I needed to delve deeper into and reflect upon my emotions. Shame was a feeling to which I had to relate while conducting the study.
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According to Owens (2006, p. 1178), ‘shame is an ever-present possibility in an interview setting’. She is referring to feelings of shame in participants, but I believe that this description also includes the researcher when conducting qualitative interviews. The researcher, however, should be able to address and accommodate feelings of shame. Shame is ‘a socially and culturally constructed feeling’ (Wilińska, 2014, p. 606) and involves both the individual and the specific situation in which it has occurred. Shame does not need to be negative; it can focus on the situation of shame and lead to political action (ibid.). I found the stories about being suicidal especially difficult. I remember Marianne, a mother of three, told me about her two suicide attempts.
Marianne wanted to talk, she asked herself ‘How could this happen?’ She wanted the professionals to pose the same question to her. Marianne talked about her family and her children in relation to the mental health services and the clinicians at the facility where she was receiving treatment. She addressed her story to the professionals in the mental health services field. Her entire family was in need of help; she was not experiencing her life crisis alone. When I interviewed Marianne, I understood the professionals’ fear; perhaps asking Marianne about her death wish could trigger her suicidal tendencies? When she talked about her need to tell, I felt shame on behalf of the professionals: did they not understand her needs? Did they ask Marianne what would be a good treatment for her? She obviously knew that her family needed help. The stigma of being a suicidal mother of three small children was a heavy burden, and Marianne wanted to talk about it (Klausen, 2015). Do professionals often meet service users with silence for fear of doing more harm? Was it easier for Marianne to talk with a researcher instead of a therapist about these things? Maybe my thoughts about not being able to work as a therapist were overall based on presumptions that service users are in constant need of treatment and therapy?
Qualitative research ‘is an embodied experience that requires some level of emotion work… [and] we need to think about how we actually do emotion work and what that might mean’ (Dickson-Swift, James, Kippen, & Liamputtong, 2009). Dickson-Swift et al. (2009) emphasize the importance of self-care for researchers, and during my research process, I received a very solid support from my supervisors. Making the research process transparent also entails inviting the readers into the ‘darker’ moments of the work. My most difficult moments when attempting to construct myself as a researcher were the moments when I wished I could do something more, to be more able to convey hope to the participants. 89
However, the consequences of adopting a social constructionist approach also include the knowledge that I was not alone in becoming a researcher; the co-construction of me as an interviewer and a listener, an analyst and interpreter, a researcher and an interlocutor all occurred in social settings with other people who participated in the study.
6.8.3 Why consider stories in context? The methodological and theoretical approaches that I chose have contributed to new insights concerning insight and user involvement among service users. Alternative approaches could have created other insights or broader knowledge (Blix, 2013). I could have chosen to interview fewer participants; I could have conducted several interviews with each participant. I could have used the transcripts from the first interviews as a starting point for discussion in the second. I could have established focus groups in which several service users could have discussed insight and user involvement. I could have chosen other analytical approaches within the narrative methodology. I could have focused on how the service users positioned themselves in their stories or conducted a more detailed examination of identity as a topic in the narratives. The possibilities appear endless.
Why focus on the contexts in the stories, then? According to Tuval-Mashiach (2014), the narrative approach involves the assumption that individuals cannot construct their identities in a vacuum and they use the social and cultural norms and scripts that are available to them. This approach highlights the importance of taking context into account. Defining the relevant contexts is a situational decision that according to Tuval-Mashiach, depends on the researcher’s point of theoretical departure (ibid.). When analyzing Sverre’s story in article 1, we identified the intersubjective, social and broader meta-cultural contexts. The second article focused on the dominant narrative of motherhood. In article 3, we identified shared decision making as essential in four contexts: 1) during admission, 2) in individualized treatment, 3) in different treatment contexts, and 4) in user-professional relationships. By concentrating the analyses on contextual approaches, I believe that we are able to examine the service users’ stories not from an illness-focused approach but instead as stories in dialogue with the community that they construct and are constructed by. When we analyze how their stories relate to broader contexts, I believe that this approach enables us to obtain greater insight into their insight into their own health and illness. This approach also gives us an impression of the participants’ experiences being service users.
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When ending this chapter, I acknowledge the aspects that I have not addressed as implications and inspiration for the ongoing dialogue of which this thesis is a part. There will always be limitations to a study or matters that could have been addressed in another manner. The conceptual framework of the study—user involvement and insight—guided the work behind the stories in this thesis.
7. Findings The study focuses on service users’ insight into their mental illness and mental health treatment and supports approaches that might be helpful for recognizing and utilizing service users’ perspective in mental health care practice. By exploring service users’ stories about experiences, evaluations, needs and self-identity, we wanted to investigate how dialogue as a source can create insight. When we examine the concept of insight, we inspire new and various ways to activate user involvement in community mental health centers and mental health in general. The articles in the study highlight the complexity of insight and user involvement and the changing social context in mental health services in various ways.
In the following section, I will describe the findings in the three articles published in this study.
7.1 Article 1 When we examined Sverre’s personal narrative, we explored his insight into schizophrenia and how he applied that insight to his experiences. The case story showed how stories are reflected and shaped by the relationship between the interlocutors. The main question that we discuss is whether using a performative narrative perspective can uphold insight as a relational term and something that is developed in the dialogue, instead of as static characteristics of the service users. Adopting a contextual narrative analysis based on the work of Pamphilon (1999) and Zilber et al. (2008), we explored Sverre’s story as a personal performative narrative in relation to the dominant narrative of insight. We understand Sverre’s story as an alternative narrative that differs from the biomedical narrative on insight. However, Sverre’s story reveals that if we adopt the more dominant biomedical definition of insight, he has insight. However, he uses his experience-oriented language, and dialogue is necessary to reach a common understanding of what insight is. By relating Sverre’s narrative to the intersubjective relation (the interview), the social field (the sociohistorical context) and
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the cultural metanarratives (the medical-oriented approach to schizophrenia), we made the following findings: •
Throughout the interview, Sverre demonstrated that he was aware of his illness. Sverre knew that his symptoms (delusions and hearing voices) were not real, but he liked to discuss what they could mean. Sverre agreed to treatment the first time he was admitted and has continued to do so. All these elements are regarded as crucial for contending that a service user diagnosed with schizophrenia has insight.
•
By participating in Sverre’s performative narrative and the dialogue that emerged during the interview, we (the interlocutors) created a space in which insight could be understood through the service user’s own language.
•
We understand insight both as a relational term and as a verb that is defined as something that we, as professionals or significant others, do in a dialogue with the service users.
This article’s contribution to both research and practice is to emphasize the importance of understanding insight as a relational, ongoing, dynamic process. The recognition of service users as experts in their own experiences and the acceptance of multiple perspectives in the field of mental illness does not undermine the role of professionals. Instead, it provides new opportunities for improved treatment of the individual and her/his network.
7.2 Article 2 The second article focuses on ten mothers’ stories about motherhood in relation to being admitted as service users in three community mental health centers. Through a thematic analysis of personal stories, we emphasize how the ten mothers make sense of their experiences of admittance to mental health services in relation to dominant discourses of good motherhood. The mothers emphasized values related to presence, caregiving and self-sacrifice (Choi, Henshaw, Baker, & Tree, 2005) in their personal stories through the following themes: (1) being able to put oneself in the child’s shoes; (2) the emotional impact of being admitted; (3) being open with children about the admission; and (4) being an emotionally available and present mother. This approach provided us with descriptive accounts of the richness, breadth and complexity of these service users’ experiences of being mothers diagnosed with mental illness. Our study provides important clues about admission to mental health services among this group of women. The mothers considered their admissions as turning points at which they transitioned from being mothers and members of the community to mental health service 92
users. The admissions disrupted their motherhood and being separated from their children not only caused loss and grief but also exacerbated their mental illnesses.
This article’s contribution to current research and the mental health field is to emphasize the importance of a more holistic mental health treatment in social environments in municipalities that support these mothers. At admission, these women need to discuss how to continue to be present and caregiving mothers. The women need to participate in designing their own treatment plans together with professionals to ensure satisfactory user involvement. These plans could also include roles for members of community support networks, including family and friends. The recognition of these mothers as experts in their own experiences allows for new opportunities for improved treatment for the individual and her/his network.
7.3 Article 3 The third article in the project focused on user involvement as shared decision making from the service users’ perspective. Through a thematic analysis, we identified four contexts of shared decision making from the perspectives of service users. These contexts included the following: (1) during admission; (2) in individualized treatment; (3) in various treatment contexts; and (4) in user-professional relationships. Our study demonstrated the complexities of shared decision making in various contexts and phases of mental health treatment. From the participants’ perspective, shared decision making concerns all parts of admission or outpatient services; it cannot be separated as concerning only certain parts of treatment.
This article’s contribution to mental health research is to emphasize shared decision making as a dynamic movement in relation to the individual service user’s social and situational contexts in everyday life. Being involved in one’s own treatment means that one might occasionally make bad decisions. This reveals a measure of unpredictability and requires dynamic relations between service users and professionals within a flexible mental health service. In summary, we understand shared decision making as a relational phenomenon that is enacted between individuals in and with their surrounding contexts. Our findings are not only relevant to mental health services but also transferable to other disciplines in which user involvement is a central topic.
The three articles shed light on different perspectives of insight, offering the reader a more complete understanding of the study’s topics and aims. In the first article, insight is performed 93
in a dialogue. In the second article, the mothers perform insight, through their storytelling with the researcher, into their own health and life situation as caretakers. In the third article, the participants emphasize shared decision making as intertwined with treatment. When decision making is shared between the involved parties, the concept of “insight” is no longer a static characteristic of the service user assessed by an expert. Instead, it is something that is accomplished through dialogue between parties who both have the service user’s best interest in mind. We consider user involvement to be present as an ongoing dialogical process in the interview settings in all the articles through the joint storytelling-processes in which we (the interviewer and the interviewee 53) participate.
From a relational perspective, mental health is never static and ‘cannot be reduced to brain activity or individual life stories, but emerges in and through processes of interaction’ (Baklien & Bongaardt, 2014, p. 625). Relationships are co-constructed and what happens between the service users and the professionals is important (Ådnøy Eriksen, Arman, Davidson, Sundfør, & Karlsson, 2014) during admission to a community mental health center. By understanding the narratives in the articles as performances of user involvement, we understand the interviews as an active text, a place in which meaning is co-created and performed (Denzin, 2001). We understand the interview setting with the researcher and the interviewees as presented in this article as transferable to everyday practice in community mental health centers that can contribute to recognizing and utilizing the service users’ perspective within mental health practice 54. If we as professionals can participate in dialogue with service users from their very first meeting with mental health services, an essentialist approach to insight will emerge as counterproductive.
8. Discussion In the following chapter, I provide some considerations in relation to the methods used in the study before discussing the findings.
8.1 Discussion of methods Some methodological considerations pertaining to the study and processes of co-construction were presented in the methods section (6.8). Nevertheless, I will discuss a few central key
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In the interview settings in which others were present, this also includes their participation in the storytelling. It is also important to include the possibility of ghostly audiences. 54 This will be further discussed in section 8.2, Discussion of the findings.
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methodology issues in this chapter. The first issue concerns pre-understanding. The second issue concerns user involvement in the research design, and the third issue concerns who owns these stories. I then present the dilemma of looking at the service users needing someone to give them ‘a voice’. Subsequently, I reflect on whether we can trust the study findings.
8.1.1 Pre-understanding the study All understanding involves some form of pre-understanding (Fredriksson & Eriksson, 2001; Gadamer, 2004). When we decided to frame this study within a social constructionist approach with a narrative methodology, we had a pre-understanding. We assumed that service users’ narratives related to their experiences within community mental health centers could tell us something about insight and user involvement in current mental health services. Insight is not seen as opposed to user involvement; instead, the two concepts are seen as two inseparable sides of mental health treatment. We also assumed that new knowledge would be constructed concerning user involvement and insight in the interviews. By adopting a narrative methodology, we also assumed that narratives make us able to ‘see different and sometimes contradictory layers of meaning, to bring them into useful dialogue with each other, and to understand more about individual and social change’ (Andrews et al., 2008). How service users create narratives in different contexts has long influenced mental health practice and research (Fredriksson & Lindstrom, 2002). When conducting the interviews in collaboration with the service users, I was expecting to hear stories connected to user involvement or a lack thereof. As noted in section 6.6.1, the stories contained many different themes. The service users were more concerned with admission, various life events, family and friends, stigma, diagnosis, medication and treatment than with talking about user involvement per se. They also talked about being met not primarily as a patient, the suffering the mental illness entailed, complications in treatment and the desire to be listened to. However, all these themes are easily connected to both user involvement and insight, underlining the importance of engaging in dialogue with service users about their needs. I think these themes also emphasize the need to see treatment as more holistically connected to life outside of the community mental health center.
8.1.2 User involvement in the research design The active involvement of service users in research processes has become a widespread international phenomenon (Gillard et al., 2012), and the involvement of service users has 95
become more accepted based on the desire of both national health departments and service users’ movements (ibid.). In Norway, the University College of Southeast Norway has initiated an educational program for collaborative research in mental health. One can thus observe the development of an increasingly active and participatory group of individuals with service user experiences who will participate in research in the field.
A great deal of the research design had already been created when I entered the study, and the narrative design was a core feature of the project. I still felt the ambivalence of conducting research on the topic of service user involvement without the involvement of experienced service users in the research process. After discussing the matter with my supervisors, (as mentioned earlier) I decided to conduct a pilot interview with a service user from a user movement organization 55. I found this interview very helpful, and the woman I interviewed offered feedback and assisted me with the development of my interview guide. Later in the project, I asked myself several times what would have happened in the study if I had been able to work with this woman throughout the research process. Would her participation (for example, in the interviews) have changed the stories told by the service users, the analysis, the discussions or the findings? It is difficult to say whether greater participation by the service users would have had an impact on the project or whether the results could have been different if the research design had been different. Truman and Raine (2001, p. 226) contend that ‘research does not need to be conceived within a participatory paradigm in order to engage the participation of service users’. I agree with Burr (2003) that the researcher must regard research as a co-production between her/him and the participants.
We have also cooperated with the National center for experience expertise in mental health (see www.erfaringskompetanse.no). We have presented our research project to service user organizations and environments. Using stories as a point of departure, we hope to elucidate how service users’ multi-storied experiences can contribute to the experience-oriented knowledge necessary to ensure user involvement.
8.1.3 Who owns these stories? There is often a gap in qualitative research between the participant’s understanding of her or his storytelling and the researcher’s interpretive analysis of the storytelling (Josselson, 2011a).
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See section 6.4, The interviews.
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When I interviewed the participants in the study, I interviewed engaged individuals who were interpreting themselves and I was involved with the ‘core meaning-making systems of real people and with issues that pertain to us, as humans, as well’ (Josselson, 2011a, p. 1).
Overall, I conducted 30 interviews during the study. In the articles upon which this thesis is based, I analyzed excerpts from the stock of 20 interviews. Would the interviewees recognize themselves in my interpretations and understandings of those stories? Is it important that they do? Josselson (2011a) emphasizes the multi-layeredness of the text and the multi-vocality of human experience in her article ‘Bet you think this song is about you’. Meanings in the text are ‘hidden’ from the interviewee at the time of the interview, and the interviewees perform their storytelling as interlocutors in a conversation with the interviewer; thus, they are not analyzing the resulting text (Josselson, 2011a).
This study can be criticized for not inviting the interviewees either to read the final transcripts or to offer their opinions of the written text of the interview in some other way (through, for example, a second interview, a focus group or other methods). Would this approach have ensured that my analysis was as close as possible to the participants’ intended meanings during each conversation? Our study includes participants who are experiencing a difficult life situation. It might create a dilemma for us as researchers to expect too much of our participants, creating a higher threshold for participation. We chose to conduct one interview with each participant in our study, which I think this both made it easier to participate and might contribute to including the more distressed service users.
At any rate, narrative work is a matter of interpretations; analyzing narrative texts involves co-constructing meanings at different levels, and the research process itself involves socially constructing knowledge with other researchers who work in the same field (Josselson, 2011a). Every reader will interpret her or his meanings into the text based on her/his experiences. When transcribing the interview, we ‘lose’ the moment of the interview; the context is no longer there. Thus, I am not writing a biography in this thesis; the stories presented are my presentation of the study. I am not seeking to offer a ‘true’ presentation of what ‘really happened’. Objectivity is impossible; from a social constructionist viewpoint, we must all encounter the world from some position or perspective (Burr, 2003). The theories and assumptions presented in the study are embedded in my perspective (ibid.).
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When Josselson (2011b) discusses multi-vocality, she refers to Bakhtin’s famous view of the self as existing only when relating to another individual. The stories we tell are always filled with our experiences and other voices. I agree with Bakhtin et al. (1986), who underlines the ‘unfinalizedness’ of human beings. Dialogues are always ongoing, and ‘as narrative researchers, we enter into this dialogue, both with our participants and with our colleagues’ (Josselson, 2011a, p. 6). In other words, the entire research process can be understood as an ongoing dialogue with future readers, the text, the participants, the participants’ significant others, the practical field and researchers who work on similar topics.
8.1.4 Conducting interviews with service users: Am I giving the service users a voice? Vulnerability is difficult to define (Hurst, 2008), and mental health professionals must adopt a reflexive attitude toward defining a service user as ‘vulnerable’ (Witham, Beddow, & Haigh, 2013). Vulnerable service users are, if one chooses to use the concept, ‘a broad and vaguely defined group of people’ (Nordentoft & Kappel, 2011, p. 369). The concept has various meanings for various people and the issue of how we understand vulnerability is important (Brown, 2011). The concept is ‘so loaded with political, moral and practical implications that it is potentially damaging to the pursuit of social justice’ (Brown, 2011, p. 314). The concept can be understood in at least two ways: the first approach defines vulnerability as a paternalistic and oppressive idea, a mechanism for expanding social control and a means of stigmatizing and excluding individuals (Brown, 2011). Another understanding of vulnerability is that it has a transformative quality and represents a fundamental characteristic of humanity that functions as a theoretical basis for freedom and justice (ibid.). Vulnerability must be understood in relation to a study’s context (Nordentoft & Kappel, 2011), and I have chosen to link the concept to an ongoing debate on empowerment narratives (Andrews, 2007). As previously discussed, many narrative researchers regard themselves as ‘giving a voice to’ vulnerable groups in society56. Positioning oneself as something other and distinct from the group that one seeks to empower can be problematic. If we articulate someone else’s narrative to form his or her identity and define him or her as a ‘vulnerable patient’, that patient becomes less powerful. Kogstad, Ekeland and Hummelvoll (2014) claim that ethical guidelines in mental health research often originate from a paternalistic culture that defines vulnerability as related to a lack of insight and an inability to cope with emotions. In this respect, vulnerability appears to contradict the concept of user involvement.
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See section 3.5.
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It is difficult to evaluate the effects of this research on the individuals who have participated in this study (Andrews, 2007). I have treated their stories with dignity and respect. I have chosen not to define the service users as a vulnerable group; instead, I view the service users as very different persons in need of individually adapted mental health services. They are not a homogeneous group with equal needs. They are very different individuals with unique stories to tell. This diversity contributes to depicting the substantial challenges encountered on a daily basis by individuals who work in community mental health centers.
I also wish to emphasize the importance of listening to the participants’ stories. According to Andrews (2007, p. 15), listening implies placing oneself at risk, thereby ‘exposing oneself to new possibilities and frameworks of meaning’. Andrews (2007, p. 16) understands listening as a process that involves the unknown in which the researcher must be ‘not only intellectually but emotionally attentive and engaged’. I understood the co-constructed stories as operating at both relational and collective levels. I define this research as more about shared user involvement in mental health services than about power or powerlessness in a traditional sense. With respect to the study’s aims, we can refer to the paradox discussed by Kogstad et al. (2014), in which there are no indications that service users desire special protection as ‘vulnerable’ in research processes, whereas research ethical guidelines can contribute to silencing service users’ stories by defining them as requiring protection because of their vulnerability.
Our study searched for another, experience-oriented language based on dialogues in a narrative environment. By defining the study participants as outside the discussion related to vulnerability, I believe that we were able to consider user involvement closer to the term of shared decision making on a meta-level within the study.
8.1.5 Can we trust the findings from this study? I will give some brief thoughts concerning whether we can trust the study’s findings 57. The data from our study were rich, and the stories were all unique and varied. I have presented the research process in such a way that it should make it transparent for the reader. I do not claim to have gathered objective or ‘true’ information about service user experiences in any manner; 57
The reason for making this brief is that I have reflected on the theory and methods chosen for the study throughout the thesis.
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all the stories were individual and the participants performed experiences in their own way. There has been a tradition within research to relate quality to validity, reliability and generalization (Blix, 2013). I agree with Riessman (2008) and Blix (2013) that the validity of a research project should be assessed from within the perspective and traditions that frame it. In our study, we have claimed a social constructionist approach where meaning is coconstructed. Thus, I have given a thorough account of my theoretical and methodological standpoint within this thesis; the stories presented can give the reader both an impression and a glance into the experiences of the service users who were interviewed. The choice of a social constructionist and narrative approach means that I have not looked for larger patterns in the material. The study could have been framed within a more political context; alternatively, I could have conducted fieldwork within the community mental health centers in addition to the interviews, to give a broader picture of the interaction between the professionals and the service users. As is known, there are many ways to both frame and create research projects. The participants appreciated being interviewed and being able to talk about their experiences as service users. I do not know whether many people were asked to take part in the study, but who did not want to participate. The recruitment went very smoothly at all the community mental health centers. The study’s research design might have affected the number of service users who wanted to participate.
One weakness in the study might be the lack of a deeper discussion related to the presence of contact persons from the community mental health centers in the interviews. If I had chosen to include the refugees’ interviews, it would have been natural to take a closer look at the presence of the interpreters in the interview situation.
This study has found that insight and user involvement are relational and dynamical processes created in co-construction between service users and professionals. The knowledge development related to insight and user involvement in mental health is valid, not only in a Northern Norwegian context but for mental health in general. Insight and user involvement is central not only for mental health service users but also for other patient groups 58.
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See page 48.
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8.2 Discussion of the findings The articles upon which this thesis is based address the research questions and aims of the study from various perspectives 59. User involvement has developed as a cornerstone within Norwegian mental health services and research. This has not occurred with insight regardless of the close connection between user involvement and insight. Bracken et al. (2012, p. 430) describe assumptions within the technological paradigm 60 to explain the priorities of mental health services:
‘…health problems arise from faulty mechanisms or processes of some sort, involving abnormal physiological or psychological events occurring within the individual. These mechanisms or processes can be modeled in causal terms. They are not context-dependent. Technological interventions are instrumental and can be designed and studied independently of relationships and values’.
Within this paradigm, insight is kept within the frames of a medical understanding. Our study claims a different perspective. I define insight as a relational and dynamic process in coconstruction, where the concept is understood as a verb. It is essential to include the surrounding contexts when listening to and analyzing service users’ storied experiences. User involvement is created in narrative environments. Stories can be a meaningful element to ‘bend the language’ and approach an understanding of other people (Lorem, 2014). Relational insight is theoretically grounded in a dynamic co-constructive perspective that focuses on service users’ experience-based stories. These stories are already in the field of practice, but they need to be recognized as an important and essential part of treatment in the mental health service. If the service user perspective is supposed to be included in mental health treatment, service users’ stories and experiences are essential to listen to. The stories can unfold insight as a mutual understanding and be the key to activating user involvement.
Below, I will reflect on the theoretical consequences that relational insight might have on the practice field. In the study, we have chosen to focus on decision-making processes, patient rights and shared decision making. The reason for this selection is based on the assumption that these three elements are central concepts in practice 61. Furthermore, I give some thoughts
59
See also page 80. The technological paradigm is mentioned in section 4, page 43. 61 These elements were also highlighted in the literature review. 60
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about mental health services from a holistic perspective, with support systems that focus on the service users’ personal and social capacities. Finally, I offer the reader reflections on dominant narratives within the study and how these were challenged.
8.2.1 Relational insight and decision making processes There is a need to create a narrative environment within the various levels of user involvement that allows the service users not only to participate to a greater extent in both planning and decision-making about their treatment but also to be involved in political processes. I look at mental health services as needing support systems that focus on the service users’ personal and social capacities. Service users are never only ‘patients’. By looking at admissions as a natural reaction to major life stresses, 62 service users and professionals can have a greater opportunity to exercise shared decision making in genuine cooperation. Both insight and user involvement are a shared responsibility in which a mutual understanding must be prioritized. It is a challenge for mental health services to develop decision-making models in such a way that they can promote user involvement in practice. Relational insight has consequences for decision-making models in several ways. Decisionmaking competence cannot be decided exclusively by the professionals, nor can it be based on agreement with the clinician (Grisso et al., 1995). Although it is understandable that praxis must measure the degrees of insight in relation to diagnosis, we need to change the basic understanding of insight as a concept. Diagnosis can be wrong; symptoms can be found in different contexts and can define various diagnoses. Some main categories may be appropriate to maintain (Gjerden, 2015), but if we focus on joint storytelling, the focus will move away from symptoms and give us a deeper, more detailed picture of the service users’ struggles in life and what might be of help. We must relate insight to the service users’ experiences and engage in a dialogue.
Furthermore, both the compliance model with a focus on medical compliance and the adherence model 63 with a focus on the communication between the service user and the professional define insight as something inherent in the patient. Concordance focuses on illness and diagnosis. Researchers have related a lack of insight to mental illness symptoms (Dolson, 2005; Quee et al., 2010). This understanding is underlined by the essentialist approach of mental health practice toward insight. Old characteristics of service users’ 62 63
See, for example, the approach endorsed by the mothers in article 2. See page 52.
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decision-making competence can easily remain in patient records and reports. Service users’ stories are considered less relevant (Gjerden, 2015). We need to change this tendency in practice. If we understand relational insight as a verb performed in a narrative environment, we claim that professionals must consider service users’ narratives as essential for a relational approach to user involvement. Shared decision-making processes must be enacted through a mutual understanding of a good treatment for the individual service user. We can identify a good treatment for the individual only if we listen to their experiences and participate in their storytelling.
8.2.2 Relational insight and patient rights In short, under Norwegian law it is the professional who decides whether a service user is competent to consent (Ministry of Health and Care Services, 2011). It is interesting to note that the national professional guideline for the diagnosis, treatment and follow-up of individuals with psychotic disorders (Ministry of Health and Care Services, 2013) does not emphasize service users’ perspectives and experiences to any real extent. The guideline defines a relational approach to including trust and basic agreement about the objective of the treatment, follow up and methods. A good relationship is characterized by the clinicians’ ability to ‘empathize, respect, engage and disseminate hope, confidence and realistic optimism’(Ministry of Health and Care Services, 2013, p.29) 64. Nothing is said about listening to service users’ stories or experiences to enable improvement or recovery. Furthermore, the guideline emphasizes that treatment must be adapted so that service users can use their own resources to obtain a better life. The guideline shows little interest in the service users’ participation in own treatment. We believe that mutual participation through dialogue in a narrative environment between service users and professionals in which insight is promoted as a shared understanding can lead to improved quality of life and improved treatment. In other words, there is a need for a fundamental change in the Norwegian national guidelines if we are to take user involvement seriously.
8.2.3 Relational insight and shared decision making Admission is a crucial point for co-constructing insight and user involvement. When the service user is admitted, we must approach issues surrounding diagnosis and insights in a different language than medical terms so that the service user has an opportunity to describe
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Own translation.
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both his or her mental illness and his or her understanding of hat illness. The experiencebased language used represents an experience-based knowledge related to mental illness and treatment, which is important in the further development of user involvement and movement towards shared decision making. The language highlights the importance of engaging in an ongoing dialogue with service users concerning their diagnosis, medication and treatment. Many service users are admitted for years. Is insight often discussed with these service users? The relational understanding of insight may give us a clue about how insight can be activated in partnership with the service users. It can also tell us what is necessary to activate user involvement in mental health treatment. Shared decision making 65 as a concept can tell us about more than medical decisions in mental health treatment. Shared decision making is defined as a model of how doctors and service users interact with each other (Beitinger, Kissling, & Hamann, 2014). If defined in relational terms connected to insight, it can reveal some of the practical challenges in the everyday life of mental health treatment. If we—as researchers, doctors or mental health professionals—can practice joint storytelling with service users that aim to promote insight in an experience-oriented language that focuses on insight as a shared process, we might recognize the continuum in which insight actually unfolds. By adopting a dialogical approach with a focus on joint storytelling in which one confronts service users as equals, not just as patients with a diagnosis, insight can be promoted. By adopting a relational approach, both parts of the dialogue are responsible for promoting insight. This approach means not only focusing on symptoms and functional impairment/pathology but also engaging a dialogue about existential questions of importance to service users. These questions could involve relationships, family, children, friends, local community networks or the joys and sorrows of everyday life. If this approach does not promote insight immediately, it will at least germinate to further dialogue in which insight can be performed in the future. The co-construction of insight means participating in dialogues that sometimes can be confusing and for which one does not know the end. It can be challenging for the service user and the professional to experience this uncertainty of insight-promoting work. From the service user’s perspective, the importance of being seen and heard cannot be ignored. The participants in our study repeated this opinion throughout the interviews. In other words, it is important to participate in the joint storytelling. Our intention is to show joint storytelling as a transferable process-
65
See section 4.7.2, User involvement models, including shared decision making.
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oriented method for promoting insight with implications for everyday treatment within community mental health centers. This approach also underlines the professional’s responsibility as a participant in the dialogue that aims to promote insight.
According to Rise et al. (2013), there is a difference between what health professionals and service users define as user involvement, and the two groups have different priorities concerning the core aspects of the concept. Rise et al. suggest that the core aspects of the concept are respect, dialogue and shared decision making (ibid.). These concepts can thus have different meanings for different individuals. There is a need for an individualized approach to user involvement in a relational based context. Storm and Edwards (2013) define the differences between mental health professionals’ and service users’ understandings of user involvement as tensions. A lack of shared understanding might hinder user involvement (Rise et al., 2013) in community mental health centers. Storm and Edwards (2013) emphasize the need for user perspectives to contribute to the continuing development of mental health services. Kogstad et al. (2014) state that user involvement in mental health remains characterized by asymmetrical relations because professionals are occupied with the diagnosis of service users’ narratives instead of listening so that they can improve the delivery of mental health services. Kogstad et al. explain this finding based on ‘a hegemonic, professional discourse creating distance from the user’s own experiences and counteracting equal dialogues’ (2014, p. 5). I agree with Ekeland (2011) that user involvement must be created in an interaction among mental health professionals, service users and current contexts 66. There is a ‘growing interest in patient’s perception of doctor-patient communication’ (Verlinde, De Laender, De Maesschalck, Deveugele, & Willems, 2012, p. 11), and recent studies emphasize this relation as ‘a complex interactional system’ (ibid.). A study by Jonas, Maier, Kissling and Hamann (2013) underlines the importance of service users feeling that they are treated politely; this makes a difference in the acceptance of and adherence to treatment. Therefore, in our study we have emphasized experience-based knowledge as closely connected to insight, which can help expand understandings of the various methods of activating user involvement in mental health services. Experience-based knowledge can be reached through dialogue in a narrative environment. Insight is a verb that is performed in dialogue with service users. By also expanding the concept of user involvement to be a relational phenomenon that is exercised in social contexts, both insight and user involvement are seen as
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This includes individuals who are important to the service user in her/his everyday life.
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shared responsibilities, which is necessary to think of as processes in which all parties participate. Insight is a prerequisite for being able to participate in treatment. The key to the activation of user involvement is therefore the recognition among all parties involved in mental health treatment (professionals, service users and significant others) that meaning, and thus insight, is performed in social relations through dialogue in a narrative environment.
8.2.4 Mental health services in a holistic perspective, with support systems that focus on the service users’ personal and social capacities Different needs and contexts affect the interpersonal dimension of mental health care (Alegria et al., 2008) and underline the need for mental health services and social support systems that focus on the service user’s personal and social capacities. The first meeting between mental health services and a service user must establish these individuals as persons first (not patients) and create an environment in which they can continue to be community members within the context of being admitted for mental health services. An important part of participating in their own treatment is just the opportunity to continue as community members. The term 'community member' includes the individual's many roles outside the community mental health center such as father, mother, son, daughter, siblings, worker, student and so on. The life outside the community mental health center is what should be the focus during admission. From this perspective, insight is an important issue for continuing as a community member.
Mental health care is a ‘complex activity’ (Laugharne & Laugharne, 2002) that includes service users, their families and networks, mental health professionals, service user movements, communities, politicians and the public. Mental health services interact with numerous disciplines, including medicine, philosophy, sociology, anthropology, social sciences, literature, criminology, law and psychology. There are numerous dimensions within the field, e.g., neurobiological, psychological and social dimensions (ibid.). From a social perspective, mental illness is defined as constructions in a social debate. According to Laugharne and Laugharne (2002, p. 320), ‘a social paradigm requires research to study what happens between people rather than what is wrong with an individual wholly detached from a social context’. This approach focuses on the social interactions in the individual’s life and treatment. The term ‘social mental health services’ is ambiguous (Haack & Kumbier, 2012), but involves contextual factors (Fleck, 1990) on both the micro- and the macro-social levels. 106
According to Fleck (1990), it is important to account for the context in which the service user lives, where he or she grew up and where he or she is being treated. Social mental health services focus on ‘the social dimension of mental health, mental illness and mental health care’ (Priebe & Finzen, 2002, p. 47). As a scientific approach, social mental health services uses methodology and theory from the social sciences to examine social factors that influence and are relevant to mental health treatment (ibid.). The term ‘social mental health services’ is related to the term ‘community mental health services’, the de-institutionalization processes in Western industrialized nations and the practice of mental health services (Priebe & Finzen, 2002). In this context, our research adopts a social mental health approach with a focus on coconstructed narratives told in dialogue with the service users who participated in the project. They located their stories in many contexts, i.e., the context in which they live (their home, their children and family, and the community), have grown up (the place they are from) and are being treated (the mental hospital, the community mental health center). They discuss both community mental health services where they are admitted and mental health practice in general.
In the development of community mental health services, it is essential to take the surrounding contexts seriously. In line with Cohen, Feiner, Huffine, Moffic, and Thompson (2003), we consider it important to emphasize a democratic and pluralistic culture within the community in which collaboration with professionals in other disciplines, service users, their families and other individuals in the community is a component of mental health services. Community mental health services must emphasize the community context as a key factor in future mental health treatment (ibid.), and the participants in the study emphasize this. The need to be seen in several contexts—as parents, family members and members of a community in genera— is as important as being seen as needing mental health treatment. This finding is relevant for the research question of how to activate user involvement in service users. By being regarded as more than ‘mentally ill patients’, individuals who require mental health services might feel more involved in their treatment.
8.2.5 Reflections on dominant narratives within the study According to Engh (2010, p. 13), some theorists define insight as ‘kaleidoscopic in nature’. This metaphor can be used more extensively in relation to insight and user involvement. The kaleidoscope is an optical instrument that originally consisted of a specially designed mirror and numerous pieces of colored plastic. The mirrors are specially cut and positioned such that 107
one sees a hexagon by looking through one end. The colored pieces can be shaken to create new patterns on a field that depicts an angle of 60 degrees on the other end. By turning the kaleidoscope, we see new patterns and new perspectives. Similarly, in the research process and work in the various articles, by 'twisting' the focus, new patterns emerged. By relating the concepts of insight and user involvement, we chose to conduct a detailed examination of the perspectives based on our theoretical and methodological approach. Thus, the perspectives selected depend on what they are related to; the pattern will change based on the objects with which they are viewed in combination.
If one chooses to use the term ‘multi-dimensional’ in relation to the concept of insight, one relates to a set of predefined dimensions. Insight is related to a complexity of features from everyday clinical practice, and the kaleidoscope will always offer patterns of a dynamic picture that depends on what is ‘at stake’ from one moment to another. The same applies to user involvement. By looking at dominant narratives related to these concepts, we twisted the kaleidoscope and the patterns revealed a co-constructionist approach related to the service users’ stories. In what follows, I will briefly describe the various kaleidoscopic patterns that appeared in connection with the dominant narratives in this study.
Dominant narratives are socially, political and culturally embedded (Esteban-Guitart, 2012) and have led to an improved understanding of the storied experiences of the service users in this thesis. By participating in narratives with the participants, resistance stories could be created in the study. Using the term ‘resistance stories’, I understand the narratives as both related to and rejecting dominant narratives. The dominant narrative of insight has contributed to an understanding that service users lack awareness concerning their mental illness and treatment. Thus, our study underlines insight as related to an experience-based language and not as exclusively belonging within a medical perspective. Insight does not exist inside the service user. Insight is what takes shape between us, between the service user and the professional through a dialogue. If we open up the dialogue and accept the experience-based knowledge that exists among service users, this approach may affect their daily treatment in community mental health centers. By listening to and accepting this experience-based language, new avenues might open that lead toward a shared understanding of user involvement based on relational teamwork between mental health professionals and the service users in the given social contexts.
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The dominant narrative of deinstitutionalization presents a new role for service users (Ministry of Health and Care Services, 2014) that is based on policy documents, mental health user movements and research on user involvement. This new patient role defines the service user as an active and engaged user who desires to participate in her/his treatment, live as a member of the local community and be primarily responsible for managing her/his own affairs. New developments in mental health care imply a necessary strengthening of the service user perspective, but the development simultaneously leads to new concepts of responsibility, self-care requirements and expectations of relatives (Frich, 2015). Responsibility within mental health care makes the individual service user responsible for his/her own life. The tasks for the professional have increasingly shifted from nursing the sick to guiding, motivating and helping the individual succeed in the role of the active service user (Jacobsen, 2015). Accordingly, user involvement is individually oriented, and it is necessary to accept that different individuals define user involvement in different ways. Not all service users wants to take an ‘active part’ in their treatment, as defined in the new policy documents. This study has shown that there are many ways of participating in one’s treatment. However, it is important to underline that individual-oriented user involvement can be performed only within relational frames. Because of the new patient role, user involvement as a concept is more closely linked to the role of the service user as a community member. All the study participants confirmed this and offered us a deeper understanding of the complexity that underlies user involvement.
Bakhtin et al. (1981) uses the term ‘monoglossia’ to refer to dominant narratives that are represented by dominant social groups. However, from a Bakhtinian perspective, language is always understood as dialogic. According to Francis (2012), different meanings and readings constantly drive statements or meanings because subjects use language in different ways; relating this to our study, our interpretations and analyses of the participants’ stories as resisting dominant narratives are expressions of what Bakhtin calls heteroglossia (Bakhtin et al., 1981). Language is understood as socially constructed; meaning is created between text and reader, interviewer and interviewee, and speaker and listener (Francis, 2012). Bakhtin also relates the concepts of monologism and heteroglossia to political language; socially dominant groups relate their ideology to monologism; however, the dialogic heteroglossia is always present within the monologic dominant narratives (ibid.). Adopting Bakthin’s perspective on dialogue, Yüksel (2009) defines knowledge as emerging from the interaction of voices. The dialogues in which I have interacted with the participants in this study have 109
represented transformations of knowledge created through dialogues and storytelling. The participants resisted dominant narratives. Their resistance represents a dialogical perspective that recognizes the need for a multiplicity of perspectives and voices in mental health services. We must listen to the experience-oriented language offered by service users to enter into a creative dialogue. We need their stories to improve user involvement in mental health services.
To end the discussion of the study findings, I hope that reflections on the work methods used in our approach can serve as practice-oriented indications of how to better realize insight and user involvement in mental health treatment.
9. Implications for practice and further research: narrative care This study’s insights have implications for mental health treatment, underlining narrative care as a transferable process-oriented method for promoting insight, with implications for everyday treatment and user involvement. Insights and user involvement as relational concepts are relevant to both patient groups and the more general dialogue on health. Narrative permeates health care, and narrative care relies on storytelling to promote health and well-being (Baldwin, 2015). According to Baldwin (ibid.) narrative care entails listening openly and respectfully to service users’ stories, with the person being listened to experiencing an increased sense of insight, meaning and empowerment. This approach includes some features concerning narratives: narratives are experiential, they bring meaning to experience, they are unique and inherently relational. Narratives are fundamentally unstable, and they facilitate change within individuals (Baldwin, 2015). The ethical dimension of narrative care is important, and one must pay close attention to the co-constructions of narratives. There is a potential to shape the narrative of the other party in terms of one’s own ideas about which story should be told and how (Baldwin, 2015). This is especially relevant to decision making and in line with Baldwin (ibid.), I agree that there must be a high degree of reflexibility among narrative care practitioners.
Insight can be achieved through co-constructed storytelling within a narrative approach with the service user on an individual level. I suggest that the time is ripe for mental health professionals to initiate new approaches based on this study’s insights into questions about insight. For people suffering with mental illness who are in need of mental health services, help is sometimes perceived as unwelcome and offensive. The more offensive this help is 110
experienced, the lower the likelihood of achieving insight into the situation. By drawing attention to narrative care, this study seeks to encourage a narrative-oriented practice in mental health services. The stories of the participants have focused on insight and user participation as processes. By adopting various analytical narrative perspectives, our research emphasizes the need for stories and their opportunities in practice. Through joint storytelling with the service users, we underline lack of insight as a failure of mutual understanding, not a failure of the individual service user. Today insight is a static term in mental health practice and is measured based on the wrong premises. The problem of insight is not that it is measurable; more problematic is that insight is connected to essentialist characteristics in practice. Thus, the narrative turn that we recommend will result in changed views of decisionmaking, treatment, diagnosis, research and legislation in the field. We have noted shortcomings in practice. Now we want to encourage mental health practice to develop new shared decision-making models based on our findings 67. Further research on storytelling and insight should be conducted.
User involvement is connected to social contexts within community mental health centers. User involvement can be interpreted in many directions, and this study’s participants emphasized the importance of understanding user involvement as individual, rooted within relational frames. Different service users will participate in their own treatment in different ways, and it is important for professionals to facilitate individual service users’ involvement. In a literature review study on user involvement by Tambuyzer, Pieters and Audenhove (2014, p. 11), the authors define user involvement as a ‘complex, multi-layered and multidimensional concept’ characterized by conceptual vagueness. One underexposed matter concerning user involvement involves ‘practical ways to shape involvement processes to obtain satisfactory, positive results and experiences for all involved parties’ (Tambuyzer et al., 2014, p. 10). All involved parties includes not only the service users and the professionals but also the service user’s significant others.
Insight and user involvement are tied together. The joint storytelling between the interviewer and the interviewees stimulated a good alliance in which insight could be performed. All our
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The work of developing new decision-making models is a demanding and comprehensive task that requires good collaboration with participants and the practice field. Because of the study’s limitations, I have not discussed the subject further in this thesis. Instead, I see it as an encouragement for the mental health services environment to accept the challenge based on the results of this work. This work could also be an interesting follow-up study.
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study participants showed insight when they were met with what Honneth (2007) calls an expression of recognition. In line with Honneth, we argue that to recognize someone ‘is to perceive in his or her person a value quality that motivates us intrinsically to no longer behave egocentrically, but rather in accordance with the intentions, desires, and needs of that person’ (2007, p. 337). The participants were seen as individuals and community members, not as diagnoses. Self-awareness and new insights could be performed through dialogue. These new insights helped the participants articulate what they understood as good user involvement and poorer user involvement. I suggest that further research should be conducted on the correlation between insight and user involvement.
This study’s insights have relevance beyond treatment in community mental health centers. Our findings are transferable to other disciplines in which user involvement is a central topic. Mental health treatment in general needs new perspectives related to insight and its consequences for activating user involvement. The admission point and the meeting with the people in charge for your treatment are essential when coping with mental illness. According to Thompson and McCabe (2012), the relationship between clinician and service user is an important alliance and is negotiated through clinical interaction; it presents a critical intervention point. Practice and further research should focus on the relational aspect of topics such as insight, autonomy, shared decision making and user involvement. Individually adapted approaches are important for individuals in need of help, within relational frames. One pivotal component in mental health policy has been communication between service users and clinicians regarding treatment decisions, and Thompson and McCabe (2012) emphasize the importance of including the patient’s perspective during treatment.
The aim of this research has not been to generalize its findings but instead to offer ‘the possibility of exploring nuances and interrelationships among aspects of experience that the reader might apply to better understand other related situations’ (Josselson, 2011b, p. 239). Many aspects of mental health service treatment are challenging in practice, and insight and user involvement are two core perspectives that are essential when meeting with service users. I suggest that studies of service users’ narratives that adopt a co-constructionist approach represent a fruitful way of conducting research that can have implications for mental health practice. By co-constructing stories with service users, I believe that we can learn something. In line with Thompson and McCabe (2012, p. 11) I agree that an ‘engagement in the psychiatric consultation itself may impact patient engagement with treatment’. 112
10. Closing remarks The aim of this study was to investigate service users’ insight into their mental illness and treatment and to provide support for approaches that might be helpful for recognizing and utilizing service users’ perspectives within mental health practice.
The research adopted a social constructionist approach with a narrative design. Participants’ narratives, in an experience-oriented language concerning insight and user involvement, were in focus. The study’s relevance concerned how insights can be applied to mental health treatment through dialogue in a narrative environment and whether this knowledge could facilitate the activation of user involvement. In this thesis, I have summarized and discussed the findings from the various analyses in the articles.
The narratives in this study showed that these participants showed insight with the researcher in a dialogue. Insight is a core concept that is assumed to be present to exercise user involvement in mental health practice. Our study suggests that user involvement is already jeopardized at the admission point, where the professional and service user are placed in a situation in which the professional is expected to assess the service user’s insight/lack of insight. This approach to insight does not promote user involvement. It is essentialist and not very dynamic. We suggest that insight must be a shared experience, a mutual understanding through narrative practice and dialogue. Face-to-face relationships are the most common interactions in daily life in community mental health centers, emphasizing the importance of the importance of dialogue in the everyday life of community mental health centers. Our study has shown insight as a relational process, performed in a narrative environment as an approach to recognize and utilize the service user perspective of mental health practice. Based on this standpoint, we claim the study's aims as achieved. This thesis has opened up new perspectives to develop in mental health practice.
If the professional and the service user can participate in a narrative environment in an everyday, experience-based language in the daily life of the community mental health center, we argue that the chances for doing insight will improve. By participating in the dialogue, we might recognize the continuum in which insight actually unfolds. We also claim that the doing of insight is a subject in need of constant attention when a service user is admitted/in
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treatment. The doing of insight in itself indicates the need for a more dynamical and relational approach within mental health treatment.
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Qualitative Inquiry http://qix.sagepub.com/ ''The Lady in the Coffin'' − Delusions and Hearing Voices: A Narrative Performance of Insight Rita K. Klausen, Svein Haugsgjerd and Geir Fagerjord Lorem Qualitative Inquiry 2013 19: 431 DOI: 10.1177/1077800413482096 The online version of this article can be found at: http://qix.sagepub.com/content/19/6/431
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“The Lady in the Coffin”– Delusions and Hearing Voices: A Narrative Performance of Insight
Qualitative Inquiry 19(6) 431–440 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1077800413482096 qix.sagepub.com
Rita K. Klausen1, Svein Haugsgjerd2 and Geir Fagerjord Lorem1
Abstract This article is based on a study of user participation and insight among 30 patients in community health centres in northern Norway. The living conditions of the patients have changed because of mental illness. Through a case study, we analyze the meaning of contexts in a meeting with Sverre, an older man, who was diagnosed with schizophrenia many years ago. One of the core features of schizophrenia is the patient’s lack of insight. Case studies have a valuable place in illness narratives, giving voice to suffering in a way different than the biomedical voice. Sverre’s narrative performance represents a different insight, which challenges the perception of everyday life in the clinic and our work with this patient group. By using a performative narrative perspective, the concept of insight emerges as a relational term and something that is developed in the dialogue, rather than through the static characteristics of the patient. Keywords lack of insight, schizophrenia, personal performative narratives, context analysis
Introduction This article emerges from interviews with 30 users at three different community mental health centres in northern Norway. The patients have experienced considerable changes in their lives as a result of a severe mental illness. Most of them had been acutely admitted to a psychiatric hospital several times. The interviews had three main areas: the patient’s insight into his or her own health and treatment, user participation, and the significance of the treatment location. The main aim of the study was to explore the process of insight through analyzing the personal narratives of this patient group. Insight is the core concept of user participation; in other words a crucial concept for every patient who comes into mental health care. It determines your treatment, medication, and whether you are exposed to coercion. Sverre, a man in his late 50s, was diagnosed with schizophrenia when he was 25 years old. A characteristic of his suffering has been a lack of insight into his condition from a clinical perspective. Normally, the interview with the patient “aims at gathering information to reach a diagnosis and establish a course of action for proper treatment. An agenda should be followed” (Ribeiro & Bastos, 2005, p. 60), and it is essential to determine whether the patient has insight into her own illness. Each research- interview in our study represented an interactional context for storytelling (De Fina, 2009; Mishler, 1986; Riessman, 2008). It became obvious quite
early in the interviewing process. Each new research interview represented new stories, a new storytelling. They all reflected and were shaped by, the relationship between the interlocutors (De Fina, 2009). Though; Sverre distinguished from the others. He was the only patient who wanted to discuss what his diagnosis meant in treatment and everyday life. He gave an insight into his own health that was extremely descriptive, and brought out a deeper understanding of insight as a relational and dynamic process. Langellier (2001, p. 176) claims that the “performance approach to narrative asserts that every performance is unique, and therefore every narrative identity is multiple, fragmentary, and unfinished.” This was prominent in the meeting with Sverre. His storytelling was discontinuous, he changed topics often, and he primarily wanted to talk about his delusions and voice-hearing. To keep the dialogue going, I had to bring myself in to the conversation, and become a part of Sverre’s investigation of his symptoms. The agenda of the doctor or the clinician, in contrast to the research interview, often follows an institutional topic 1
Department for Health and Care Services, University of Tromsø, Tromsø, Norway 2 University of Nordland, Norway Corresponding Author: Rita K. Klausen, Department for Health and Care Services, University of Tromsø, 9037 Tromsø, Norway. Email:
[email protected]
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agenda, such as “hearing voices” and establishes a clear asymmetrical relation between the participants in the conversation (Ribeiro & Bastos, 2005, p. 60). Insight has many dimensions and consequences in the meeting between health professionals and patients. It serves as a barometer, a proxy through which patients measure the distance from their own identity claims and worldviews (Razon & Ross, 2012). It is also the barometer from where clinicians determine which treatment the patient will receive. How can we challenge the concept of insight from a different angle? Is it possible to address it in such a way that insight can become a relational dynamic process between patient and clinician? Can the meeting with Sverre give us a new understanding of how insight can be prepared in cooperation with patients? In this article, we highlight some key points within the concept of “insight” in schizophrenia that are connected with the research interview as an interactional and local context. We explore context in relation to Sverre’s performative narrative, and expand the term context by following Sverre’s delusions and voice-hearing. We connect it to a larger social sphere and a cultural metanarrative sphere. By using these terms within context, we hope to transfer the symptoms of the illness to become a relational concept, which occurs in the interaction and dialogue. In clinical everyday life and work, health professionals have long held a more nuanced view of insight among schizophrenia patients, focusing on the patient’s coping and less on lack of insight as a cognitive shortcoming or a static characteristic of the patient (Lorem, 2009). By moving the focus away from the patient’s coping and toward insight as a relational term, we encourage health professionals to open a dialogue with the contextual embedding of illness narratives. A narrative performance approach requires that the clinicians make themselves visible as partners in the narrative contract with the patient (Langellier, 2001). This way of approaching the material “opens up analytic possibilities that are missed with static conceptions of identity and by essentializing theories that assume the unity of an inner self.”(Riessman, 2003, p. 8). A case study might give practical knowledge back to the field; “In evidence- based medicine, the case of an individual has been downgraded to the status of an “anecdote,” but in teaching the case study thrives, for it is the best way to communicate practical knowledge to trainees. It is through detailed examples that clinicians come to understand what is involved in illness and treatment.” (Riessman, 2003, p. 6).
First, the story of Sverre is defined as a personal performative narrative, where performance is a key point for understanding his storytelling. Before presenting the
contextual frame, we focus on the dominant narrative of insight. Next, we analyze Sverre’s storytelling in three different contextual spheres. Then, we relate these spheres to the concept of insight as a relational term. Finally, we conclude with proposals for improved clinical practice, focusing on a more democratic psychiatry, and relational dialogues with a stigmatized patient group.
The Personal Performative Narrative “The impulse toward narrative is a fundamentally human one” (Miller & Taylor, 2006, p. 169). Life stories are socially situated actions and are identity-giving (Karlsson, 2006; Mishler, 1999). They are created and received in a context. In fact, performing personal narrative is radically contextualized (Langellier & Peterson, 2006, p. 152); . . . embodied in participants who tell personal stories of experience, situated in the interactional and material constraints of the performance event, and embedded within discursive forces that shape experience, narrative and, selves.
Personal narrative is performed everywhere (Langellier & Peterson, 2006), and “. . . people’s storytelling and stories about their experiences and expectations can contribute to knowledge about people, culture, and society” (Karlsson, 2006, p. 57). “Performing personal narrative reclaims and proclaims both body and voice: the personal gives body to narrative, and narrative give voice to experience” (Langellier, 1998, p. 207). We focus on the narrative as a personal performative event, and the interview with Sverre serves as a contextual frame. This approach refers to what Georgakopoulou (2006, p. 123) calls “the second wave of narrative analysis” that has “moved from the study of narrative as text (first wave) to the study of narrative-in-context” (Phoenix, 2008, p. 64). . . . the focus shift even more to narrative in the context of its telling, to the fact that stories are collective or collaborative productions that not only take place under particular social conditions, but are social actions. (Brockmeier & Carbaugh, 2001, p. 12)
When we enter the personal performance narrative we “interpret its symbolic universe to discover the complexity of its extraordinary meanings and practices” (Madison & Hamera, 2006, p. 7). Sverre’s experience of illness has a knowledge value related to the topic of insight. In general, insight is difficult to ask people about. If I went to my doctor tomorrow, and she asked me whether I had insight in my own health, I would not know what to answer. Studying the aspect of insight demands an approach other than direct questions about insight. “The participants in any conversation, including interviews, have to establish their right to speak on the topics being discussed.” (Phoenix,
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Klausen et al. 2008, p. 70). We had to agree as to what we were talking about and establish the dialogue. The interview is a complex, dialogical process where the interlocutors have to negotiate the topics on which the conversation should focus (Mishler, 1986, 1999). I started all of the interviews with the open question “Can you tell me what brought you to psychiatric services?” The open question was designed to elicit a narrative account (Thornhill, Clare, & May, 2004). Sverre told me that his girlfriend died when he was 25 years old. He had been mentally ill since then. This focused attention on how Sverre built his narrative and the performative work from which he wanted the dialogue to emerge (Phoenix, 2008). The story of Sverre is created with the help of the interview, and it is therefore regarded as a social structure characterized by the special relationship that involves just that: an interview situation. At the same time, it is characterized by the story of his experience and his understanding of experiences, actions, situation-bound elements, and cultural thought forms (Perez Prieto, 2006). The conversational dialogue stresses the performative nature of interviews. The narrative is seen as “practice within a social interaction” (De Fina & Georgakopoulou, 2008, p. 275). The performance, in turn, “situates narrative as both a making and a doing.” (Peterson & Langellier, 2006, p. 179). Sverre’s wondering about schizophrenia and what this disorder really is emerges as the conversation progresses. Through the description of the visual pictures he has in his mind and the voices he hears, we can discuss insight from his perspective. It is an ongoing process: “. . . [Stories] are performative, destabilized, and deferred, rather than an inherent, unified property of the individual” (Smith & Sparkes, 2008, p. 24). To approach the narrative as a performance requires a theory that takes the context as seriously as the text itself (Langellier, 1999). By doing so, we can see Sverre’s performance also as political; it does something: “. . . in doing something in and with discourse that is neither uniform nor stable, performing may reinscribe or resist the bodily practices and material conditions in which they are embedded. Performing personal narrative can work to both legitimate and critique relations of power” (Langellier & Peterson, 2006, p. 164). In the interview with Sverre, the personal performative narrative elaborates a focus of concern: the clinical approach to lack of insight as a core feature of schizophrenia seems obvious. Within a community mental health context, Sverre’s delusions are often viewed as “delusional ideas that are attributable to the illness, serving simply as one of its more characteristic symptoms” (Roe & Davidson, 2006, p. 88). However, his storytelling and stories are multilayered and filled with mental leaps and associations. Sverre’s narrative performance is complex and opens a richness of approaches, theoretical understandings, and unexpected findings (Andrews, Squire, & Tamboukou, 2008). Though;
by discussing his diagnosis, Sverre brings a question mark on today’s psychiatric practice around schizophrenia patients and insight.
The Dominant Narrative of Insight “Schizophrenia is the medical term used in the field of psychiatry that most closely captures phenomena that otherwise would be described by the lay public as insanity or madness” (Roe & Davidson, 2005, p. 89). The dominant story of insight among schizophrenic patients has recently developed. The most common definition of insight involves three aspects: you are consciously aware of your own suffering, you are able to redefine the symptoms to be part of the disorder, and you recognize the need for treatment. These three aspects may vary and will be present in varying degrees. Once treated as a one-dimensional, categorical concept, insight is now considered “a complex and multidimensional phenomenon.” (Amador & Strauss, 1993, p. 306). “Lack of insight is understood both as explanatory and descriptive of psychosis. The former perspective causally connects psychosis to the patient’s lack of contact with objective reality” (Lorem, 2009). The latter perspective perceives lack of insight as a result of an underlying condition or disturbance, such as a neurological or psychological dysfunction, and cannot be seen as anything but a symptom of an underlying disease (Kringlen, 1982). “Regardless of how the concept is defined, the impact of insight into illness and life situations is widely discussed” (Lorem, 2009). The lack of understanding as an inherent aspect of psychotic disorders is commonly known, and it is the core feature of schizophrenia (Roe & Davidson, 2005). If we accept these assumptions, . . . people are doomed to confirm their diagnosis regardless of how they react to the information they are given. If they accept the diagnosis, for instance, this constitutes their agreement, despite the fact that if they really do have the illness they are not supposed to be capable of having such awareness. Agreement also renders all of their other beliefs, ideas and decisions suspect at best, as we still view schizophrenia as impairing their cognitive abilities and judgement. If, on the other hand, they deny the diagnosis, or refuse to accept it, this act can be used as evidence that the person lacks insight and therefore must have a mental illness. (Roe & Davidson, 2005, p. 91, Roe & Kravetz, 2003).
Biomedical interventions are considered essential to create knowledge, which is necessary to maintain consent for treatment, willingness to enable the individual to reestablish control over the symptoms, and improve quality of life (MacNaughton, 2008). Insight into one’s own health and treatment is therefore connected with dealing with the illness and healing. In modern psychiatry based on outpatient care, “insight is necessary for compliance with treatment
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and prevention of relapse” (Flyckt, Taube, Edman, Jedenius, & Bjerkenstedt, 1999, p. 377). As a result, the person with schizophrenia “is viewed as lacking the essential prerequisites for being a narrator of her own experience: awareness and insight” (Roe & Davidson, 2006, p. 86). . . . insight is often judged in relation to the beliefs of clinical experts, and less attention has been paid to how people with schizophrenia make sense of their own experience of the illness in terms of the insight formation. The main criticism of this approach has been that it fails to account for patients’ perception of the illness, which is implicitly embedded within a personal narrative (Ko, Yeh, Hsu, Chung, & Yen, 2006, p. 124).
If Sverre is offering us an alternative narrative to the biomedical one, the common response would be to look at it as denial, lack of insight, transference, or evidence in direct contradiction to the narrator’s claim of validity (Estroff, 2004). According to Roe and Davidson (2006), this perspective results in an overly narrow view of awareness because the position reflects the fact that objective/descriptive psychiatry has tended to equate insight with the person’s ability to articulate the perspective of the clinician (Greenfeld, Strauss, Bowers, & Mandelkern, 1989). “In a dialectical relationship with narrative are incoherence and silence. If we run into problems with our personal or professional narratives, if they stop making sense to us or to others, we find that a taken-for-granted coherence has been lost” (Thornhill et al., 2004, p. 182). Geekie (2004, p. 148) underlines the almost total absence of the voices of those who have the most direct experience of schizophrenia—the person diagnosed as “schizophrenic”—in literature and research. These voices, both in professional literature and in clinical settings, have been marginalized, according to Geekie, and “this has been to the detriment of clients’ interests and clinical practice as well as research efforts directed at investigating the nature of the experience.” One consequence of this marginalization has been “the paucity of terms available to us to refer to the multitude of ways in which people with a diagnosis of schizophrenia relate to their experience.” Insight is often the first term that comes to mind in this regard, and “it usually refers to whether the client agrees with the clinician’s position” (Geekie, 2004, p. 149). Sverre was young the first time he was hospitalized. Insight was defined differently then. Maybe Sverre had an understanding the doctor did not catch up? As a result of this we can ask; is the theme insight discussed with Sverre for each new admission? If insight is a dynamic process that requires that clinicians continuously listen to Sverre in his everyday life, it should be discussed and highlighted on a regular basis. For Sverre as a patient, insight is a concept of great importance. It is crucial for his treatment, therapy, and medication.
A Contextual Frame Between the individual, the narrator, and the context are the places of identity construction, the narrative context, and the storytelling context. In the text, Historien om räven och andra berättelser [The story about the fox and other stories], Perez Prieto uses the anthropologist Bruner’s distinctions (Bruner, 1986; Perez Prieto, 2006). These can be fruitful in the interview situation; distinctions between the lived life (what happened to Sverre when the suffering became part of him), the perceived life (how Sverre is experiencing the disorder), and life as it is told (how Sverre talks about suffering). This serves as the basis of the narrative, so to speak. The context enters the story in a complex choreography and moves on several levels. The context is placed in the space between narrator and listener, between telling and setting, between reader and text, and between history and culture (Riessman, 2008). When we look at the conversation with Sverre from a performative perspective, it is emphasized that the story is created in the moment and that it occurs in a vital and vibrant setting. The narrative activities that occur within the interview situation also articulate aspects of the wider social context (De Fina, 2008). Reading for context is not a simple task, as there seems to be no limit to relevant contexts (Zilber, TuvalMashiach, & Lieblich, 2008). The zoom model has been developed by Pamphilion (1999) to analyze the multiple levels of meaning found in a story. The metaphor derives from the field of photography and allows us to focus on particular levels of interest and to “freeze frame” that level for indepth analysis (Pamphilion, 1999). The micro-zoom focuses on the oral dimension of the life story, and the meso-zoom turns the focus to the individual’s process of storytelling. At this level, we would search for themes that have been constructed by Sverre to create coherence in his life story. We would also look for what the narrative is missing. “The macro-zoom level focuses on the sociocultural collective dimensions of the story” (Pamphilion, 1999, p. 395). The fourth level is called the interactionalzoom, and it is the place where the researcher zooms onto herself and the research as a whole. The zoom model can be seen as a precursor to another context theory within performance narrative studies. Zilber et al. (2008) introduces three spheres of context that are relevant: intersubjective relations, the social field, and cultural metanarratives. In the following analysis, we will use these different spheres when we enter the interview situation.
Intersubjective Relations The immediate relationship and interaction that occurs in the interview represents a context-sphere in which the identity is linked to the story at the moment (Zilber et al., 2008). In conversations with Sverre, he entered into an agreement in advance that dealt with the content of the interview. He
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Klausen et al. had been presented by a contact person at the community mental health centre and would like to speak to “this researcher from Tromsø.” We met early on a Tuesday morning for the interview, and for Sverre, the day had started many hours prior to our meeting. He had woken up at 5 o’clock in the morning, ready to be interviewed and eager and anxious to see if he would answer “right.” He took a chair and sat close to me. Several times during the interview, he leaned forward and looked at the tape recorder on the table and wondered if what he said was in that box. There was a contact person, Turid, present during the interview, and she sat on a sofa opposite us. Sverre approached her once during the interview; otherwise, he looked at the floor and continued talking. When I asked him whether he has planned admissions, he tells me about the lady in the coffin: Rita: Is it like. . . do you have regular admissions, or. . . ? Sverre: Yes. I have been given that. Yes. Rita: Can you tell me about it? Sverre: No, it has, you know. . . I was. It was the schizophrenia and then it was like it was getting worse, it got worse and worse. The nurses think it dissolves, but it does not do that. It is like this; the voices want me to dissolve. . . so that I miss the psychologist. . . so they started to make a headache, because there was a direct contact between me and the dead person. So they wanted a headache, and then I made it. . . so I can’t sit at home, all the time with a headache, maybe the voice will be nice, when it sees that I am getting treatment. Like “this and that,” like thinking. . . then there was a lady who came in the air once, in a coffin, behind me and Turid (laughing). Rita: Yes. Sverre: . . . and she went into my stomach. A dead cadaver. A dead lady. Her daughter was beside the coffin, when I asked why she was coming along, “no,” she was about to fix her daughter a boyfriend. Why she came into my body, that riddle I don’t understand, I mean; it’s the worst schizophrenia I have experienced, at least. On the intersubjective level, or the micro-zoom level, I noticed that Sverre knew that he was going to be interviewed as part of a study. He was not sure what we were going to talk about before we started, and I told him that we could talk about his life experiences. Before I had turned on the tape recorder, he started telling me why he got sick. This can be seen as a lead for interpretation (Zilber et al., 2008). From the passage above, we can see how Sverre interprets the narrative; the lady in the coffin can be understood as his dead girlfriend and the expression of his loss. Knowing the context of the interview, Sverre wanted to talk about his delusions and voice-hearing connected to dead people. His
voice was low, and he continued to say, as a comment on his own narrative “yes,” “yes yes yes” as if he wanted to ensure himself and the interlocutors that he had said what he just had said. During the interview, he mentions the lady several times and, in one case, he tells me how all these dead people are following him, in mirrors and inside his body, hunting him. Several times, he stopped in his narrative, and asked me questions such as where my parents came from and how old I was. I answered his questions, and then he continued with his narrative. At the meso-level, Sverre’s narrative is intense, and it demands the interlocutors to follow his associations. His storytelling is indeed visual, and also painful. It is difficult to grasp the coherence at some points, but it may not be relevant in the “here and now.” Sverre is filling his storytelling with an alternative coherence. If we should focus on what is missing in the story, some would argue the only things missing are coherence and insight.
The Social Field The social field is related to the sociohistorical context in which life is lived. When narrating their lives, people situate their stories within certain social structures and historical events. “Their choice of a relevant social field is meaningful and may be interpreted to indicate what they see as relevant or important for their identity” (Zilber et al., 2008, p. 1053). According to Pamphilion (1999), the macrozoom might include both the social field and the cultural metanarratives. Let us first focus on the social field. Sverre’s narrative is characterized by many associations and is not linear in shape. When Sverre talks about his suffering in a larger context, he mentions the mental health system and the clinicians around him at the place where he is receiving treatment or he talks about the Norwegian Princess Märtha Louise. Rita: But it must be nice to have someone to talk with? Sverre: Oh yes, I have to say it like that, it’s no good to sit alone at home all the time with the schizophrenia, then you start talking with yourself. One is constantly awakened, and it’s like. . . like that, so like that. What is schizophrenia, anyway? Is it a hole in the head? Or is it me that, or is it the thoughts that. . . for instance, if Märtha Louise is on the television, then it’s just like she knows me, and I get these voices from her too, from the television as well, and I can talk with the pictures, and. . . they answer too. Rita: Hm. But I think that. . . Sverre: So strange that schizophrenia. You see these dead pictures in the hallway, then they start talking to me. Old people that are dead. But it isn’t. . . thus, from my side they are talking. Just like they are starting to talk like I want them to, you know. Talking like that, nothing from their side. Just half agree, talking like that.
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Rita: But I think you said something very wise just a minute ago, you said that schizophrenia is probably different for everyone? Sverre: Yes. Rita: And I think you’re right. The fact that we all experience it very differently. So I do not think it’s so easy to say “that’s it” and “it is not so.” Sverre: No, of course, I have gone my schools, you know, and all that, so I really don’t know what’s wrong with these voices, it’s a sort of ascendancy in my young men voices, ascendancy over me. Rita: Hm. Sverre: I don’t know what’s wrong with me, I don’t know, that’s the big question, yes.
(laughs). I had a lot of responsibility when I was working as well. A lot.
When Sverre pulls the Princess in to the conversation, it might represent someone with whom he can identify. The Norwegian Princess has been much discussed in the media in recent years for her alternative beliefs and the exercise of her role as a royal. She claims to be able to talk with animals and angels, and this is probably something that Sverre has experienced himself. It is not to say that Princess Martha Louise has a mental illness, but she speaks a language that Sverre can identify with and understand. “The social field context relates to the personal depiction of the public time and space in which the identity unfolded” (Zilber et al., 2008, p. 1063). Sverre wishes here to discuss what his condition actually is: “is it a hole in the head?” He is clearly aware that the voices come from within him, but he would like to know why that is the case and what the researcher thinks about it.
Sverre lives within a meaning system that characterizes his suffering in a way that confirms his lack of insight. The dominant culture in psychiatry does not recognize his alternative language when he discusses his own health, and Sverre answers to this by denying knowledge of the system. He does not know the identity of this system; he says. Psychiatry. Sverre does not know how “to read” the system or how it can help him. “The shift from holding up a dominant worldview to which we expect all perspectives to correspond, to acknowledging the coexistence of multiple, diverse views may be necessary precondition for encouraging people with schizophrenia to compose and share their narratives, and for these narratives to be respected, not only as valid and useful tools for research, but as a foundation for recovery as well” (Roe & Davidson, 2005, p. 91). Within the clinical context that Sverre is in, his stories primarily characterize an expression of the symptoms of his disorder (Roe & Davidson, 2005). In a study of the explanatory models of people who experience psychosis, two main findings were reported. The first finding was that the opportunity to talk in depth about what illness experiences mean to people was important. The second finding was that there are many ways in which clients understand their psychotic experiences (Geekie, 2004, p. 151). By taking part in Sverre’s personal performative narrative attempts to find his own experience, one can see the concept of insight in a more relational sense.
Cultural Metanarratives Dominant narratives “reflect cultural themes and beliefs that provide a local story with coherence and legitimacy” (Zilber et al., 2008, p. 1054). In the dominant story of schizophrenia, we see that there are a number of medical signs of suffering in its expression. Unfortunately, there are areas of the psychiatric field where a pessimistic view of prognosis in schizophrenia once existed. There are indications that bad treatment outcomes are caused by an incomplete understanding of the disorder (Granhus, 2010). Sverre has probably, during his many years in treatment, been subjected to several surveys of the disorder. When I ask him how it was when he first came in contact with psychiatric services, whether he was relieved or desperate, he replies: Sverre: It was not like that. Lost my friends (coughs), the psychiatry, I approved it, afterwards MUST, I thought like “it’s my mother who has decided this,” I thought. I had asked them several times whether it was my mother, but they. . . .no, I believe it was my mother, she knew it straight away. So I did. Yes, I thought when I am such a quiet and calm guy, maybe I’m just thinking too much, you know
Rita: Hm. Yes. Sverre: But it is probably just to use the mind, what to do the day after and things like that. No. . . and then there are meetings and all that. Meetings when you come in, and then nothing more, then you have a supporter and then there was a trip to town, from the psychiatric hospital, to take a look at clothes and stuff. . . but it’s like. . . I don’t really know what the psychiatry is, I don’t know that. Rita: No. Sverre: That’s why I say it like that (laughs).
Insight as a Relational Term In the meeting with Sverre, we argue that insight is a relational concept, which he with his own language, his delusions and voice-hearing, share with us and we perform together. From a narrative perspective, the delusions and voice-hearing represent Sverre’s active attempt to make sense of his experiences (Roe & Davidson, 2006). He wishes to discuss the condition and treatment. Through the dialogue, the interlocutors create a space where insight can
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Klausen et al. be understood through the user’s own language. Insight is considered a verb, not a noun. According to Denzin (2003, p. 16) “the performative turn looks toward an interactionist epistemology, one where context replaces text, verbs replace nouns, structure become processes.” When we attend to the telling of the narrative, it allows both “a focus on episodes or event stories. . . and aspects of narrative identities that are diachronic in that they present different time frames. . . by attending to what is presented in the interview situation and what is being claimed on the basis of experience” (Battersby, 2006; Järvinen, 2004). Diagnostic concepts of the disorder were not an issue in this conversation, and Sverre could, through his own experiences, provide a common understanding of his health. According to Pamphilion’s interactional-zoom, “a life history is the result of the relationship between a particular person and a particular researcher” (Pamphilion, 1999, p. 396). Applying this concept to the coherence of Sverre’s story, it is required that I, as a researcher, accept his experience of suffering. “. . . the researcher’s interpretative role is an active one at every point as she or he chooses what to elicit, highlight, and make visible” (Pamphilion, 1999, p. 396). Within the clinical context, this means that the clinician chooses which subjects to work on in the dialogue with the patient based on what is necessary for mutual understanding. The view of context not as a static surrounding frame but as a set of multiple and intersecting processes that are mutually feeding each other with dialogue is now a consensus (De Fina & Georgakopoulou, 2008). We can look at insight in the same way, as a multiple and intersecting process that is created between the clinician and the patient. Sverre must have become a participant in, and not a spectator of, his own treatment. By taking hold of the users’ own language related to expressions of suffering and experience, one can approach the understanding in relational terms. Insight will be something that occurs in the conversation and is then considered as something to be practiced together. Patients should increase the chance to formulate their problems with their own concepts (Terkelsen, 2010). Looking at the three sections from Sverre’s story, we observe the following. In the story about the lady in the coffin, he shows that he is clearly aware of his own suffering. He is familiar with the diagnosis and expresses it through delusions about the woman in the coffin. In the second section, Sverre is able to redefine his symptoms to be part of the disorder: “But it isn’t . . . thus, from my side they are talking. Just like they are starting to talk like I want them to, you know. Talking like that, nothing from their side. Just half agree, talking like that.” Sverre knows that his voice comes from within and does not represent an external reality. He knows that he is hallucinating and that it is part of his illness. In the last section, about how he experienced the first contact with psychiatric services, Sverre said that he accepted the psychiatric services at
once. He says: “So I did. Yes, I thought when I am such a quiet and calm guy, maybe I’m just thinking too much, you know (laughs).” He has agreed to treatment. These three sections show us that Sverre meets the dominant narrative definition of the criteria that must be present to say that schizophrenia patients have insight. However, Sverre displays these criteria in a relational context in which he knows that he will not have to respond to clinical tests or questionnaires. Insight is not considered a static unit of knowledge or a story related to the life cycle (Lysaker, Clements, Plascak-Hallberg, Knipscheer, & Wright, 2002); rather, it is rooted in relationships and dialogue with other people. Through the conversation progress, Sverre uses his own language and his own terms to describe the experience of suffering. Psychotherapy has long sought to increase the narrative context in work with schizophrenics (Haugsgjerd, 1994), but if you extend this to include treatment on a larger scale, it could change the life of this user group. Treatment for this group of people is today largely dominated by biological and psychosocial models (Granhus, 2010; Roe & Davidson, 2005) and has less focus on the stories of the individual in treatment. If a user presents an alternative narrative to the biomedical, it is usually interpreted as having a lack of insight (Roe & Davidson, 2005). Research shows that a dialogue-based approach to people who are in a psychotic state can lead to improvement (Terkelsen, 2010). “It is only in the uniqueness of the history of each individual, and in the meanings that each person assigns to that history and to their “symptoms” that any true cause can be discovered” (Silver, Koehler, & Karon, 2004, p. 209). According to Leader, the treatment of psychosis should be situated outside the traditional parameters of “mental health,” which relies on the idea that the clinician knows in advance what is best for the subject. “An openness to real dialogue is crucial here, and the therapist must avoid any attempt to show the subject that they are thinking “incorrectly” or failing to conform to a right way of perceiving the world” (Leader, 2011, p. 298). More therapy traditions that have a place for storytelling should be considered. A democratic psychiatry requires patients and practitioners “willing to act in situations where outcome cannot be predicted an advance. In such situations a politics of new possibilities can be imagined and made to happen” (Denzin, 2006, p. 335). Sverre’s story shows that it is possible to gain insight from a perspective different from everyday clinical work. The three spheres of context show that the interview is a dialogue where insight could be acted out.
Conclusion The first contribution of this article to the field is to provide a forum for the narrative performance of a man diagnosed
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with schizophrenia and his experiences from within the community health services in northern Norway. Narrative, according to Lorem, has two assumptions. One is that we can put ourselves in the story’s location, whereas the second implies that the meaning is established in human interaction (Lorem, 2006, p. 172). To be able to interact and communicate, says Lorem, we rely on a common language that already exists in clinical practice (Lorem, 2006). However, being positioned to interpret a story does not mean that we understand it: . . . a personal narrative is not an exact record of what happened, and nor does it mirror the wider world. It is always tentative and cannot provide certainties because of its multilayered meanings. . . .Each person brings to the narrative a different interpretation. The narrative re- presents experience rather than providing the reality (Bold, 2012, p. 30).
By acknowledging Sverre as the expert on his own experiences, we hope to bring some important implications for research and clinical practice to the field. Acknowledging mentally ill patients as experts need not be viewed as undermining the expertise that clinicians and researchers bring to the subject. Rather, “recognizing that there are multiple perspectives. . . on schizophrenia may enhance the quality and usefulness of the debate, illuminate the nature of their experiences and lead to improved clinical services” (Geekie, 2004, p. 159). The second aspect of the article was the reading of the narrative in a contextual frame, where the relational term of insight could be given a place. Narration requires relationships and being engaged in the other’s expression. By presenting sections from Sverre’s story, we mean to emphasize the need for a more relational understanding of the term “insight,” where the dialogue becomes central to the understanding of the user’s perception of themselves and his or her life situation. Through delusions and voice-hearing, Sverre described how he experienced the disease. Narrative is “a unique form-finding and meaning-making activity” (De Fina & Georgakopoulou, 2012, p. 21). The lady in the coffin represents a picture of how Sverre experiences his daily life and tells us that the lady is dwelling in him. He needs to grasp the experience. He needs to tell. Narrative performance is not a disembodied invention waiting to be found by any knowledgeable observer and analyzed within a neutral or stable context (Langellier & Peterson, 2004, p. 30). According to De Fina and Georgakopoulou (2012, p. 61), you can state the performance act in storytelling as critically important, here in the discussion about clinical practice and insight as a term: . . . the notion of performance becomes more closely associated with the idea of contextualization as a process that allows for a more dynamic view of the relations between narrators, events,
speech communities, and cultural contexts. In this respect, context is not a list of situational and cultural elements that determines the structure and shape of narrative, but an orchestration of those elements that come alive in specific communicative situations.
Sverre’s performative narrative calls for a praxis-based ethics within community health centres. A commitment to a more democratic psychiatry can be an empowering, dialogical experience for both patients and practitioners (Denzin, 2006). Author’s Note The project was approved by the Ethics Committee of the Fifth Region in Norway in 2011. The interviews were conducted by the first author. In this article, the “I” refers to R.K.K., and the “we” refers to R.K.K, S.H., and G.F.L.’s collaborative research and analysis.
Declaration of Conflicting Interests The authors declared no conflicts of interest with respect to the authorship and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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Leader, D. (2011). What is madness? London, UK: Penguin Books, Hamish Hamilton. Lorem, G. F. (2006). Samspill i psykisk helsearbeid. Forståelse, kommunikasjon og samhandling med psykisk syke [Teamwork in mental health. Understanding, communication and interaction with the mentally ill.] Norway: Cappelen Akademisk Forlag. Lorem, G. F. (2009). The patient experience with psychosis as seen from the helper’s point of view. In K. Myers (Ed.), The patient: Global interdisciplinary perspectives (pp. 179-204). Oxford, UK: Inter- Disciplinary Press. Lysaker, P. H., Clements, C. A., Plascak-Hallberg, C. D., Knipscheer, S. J., & Wright, D. E. (2002). Insight and personal narratives of illness in schizophrenia. Psychiatry, 65(3), 197-206. Macnaughton, E. (2008). Understanding insight development in early psychosis: A narrative approach (Doctoral Thesis. University of British Columbia, Vancouver, British Columbia). Madison, D. S., & Hamera, J. (2006). Introduction: Performance studies at the intersections. In D. S. Madison & J. Hamera (Eds.), The Sage handbook of performance studies (pp. 325338). Thousand Oaks, CA: SAGE. Miller, L. C., & Taylor, J. (2006). The constructed self: Strategic and aesthetic choices in autobiographical performance. In D. S. Madison & J. Hamera (Eds.), The Sage handbook of performance studies (pp. 325-338). Thousand Oaks, CA: SAGE. Mishler, E. G. (1986). Research interviewing. Context and narrative. London, UK: Harvard University Press. Mishler, E. G. (1999). Storylines. Craftartists’ narratives of identity. Cambridge, MA: Harvard University Press. Pamphilion, B. (1999). The zoom model: A dynamic framework for the analysis of life histories. Qualitative Inquiry, 5, 393-410. Pérez Prieto, H. (2006). Historien Om Räven Och Andra Berättelser. Om Klasskamrater Och Skolan På en Liten Ort – Ur Ett Skol- Och Livsberättelseperspektiv [The story about the fox and other stories. About classmates and school in a small town—From a school and life story perspective.] Karlstad, Sweden: Karlstad University Studies. Peterson, E., & Langellier, K. (2006). The performance turn in narrative studies. Narrative Inquiry, 16, 173-180. Phoenix, A. (2008). Analysing narrative contexts. In M. Andrews, C. Squire & M. Tamboukou (Eds.), Doing narrative research (pp. 64-77). Thousand Oaks, CA: SAGE. Razon, N., & Ross, K. (2012). Negotiating fluid identities: Alliance-building in qualitative interviews. Qualitative Inquiry, 18, 494-503. Ribeiro, B. T., & Bastos, L. C. (2005). Telling stories in two psychiatric interviews. A discussion on frame and narrative. Applied Linguistics in Latin America: AILA Review, 18, 58-75. Riessman, C. K. (2003). Performing identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research, 3, 5-33. Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: SAGE.
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Roe, D., & Davidson, L. (2005). Self and narrative in schizophrenia: Time to author a new story. Medical Humanities, 31(2), 89-94. Roe, D., & Davidson, L. (2006). Self and narrative in schizophrenia: Time to author a new story. In F. Rapport & P. Wainwright (Eds.), The self in health and illness. Patients, professionals and narrative identity (pp. 83-95). Oxford, UK: Radcliffe Publishing. Roe, D., & Kravetz, S. (2003). Different ways of being aware of a psychiatric disability: A multifunctional narrative approach to insight into mental disorder. Journal of Nervous and Mental Disease, 191, 417-424. Silver, A. L., Koehler, B., & Karon, B. (2004). Psychodynamic psychotherapy of schizophrenia. Its history and development. In J. Read, L. R. Mosher & R. P. Bentall (Eds.), Models of madness. Psychological, social and biological approaches to schizophrenia (pp. 209-222). Hove, UK: Routledge. Smith, B., & Sparkes, A. C. (2008). Contrasting perspectives on narrating selves and identities: An invitation to dialogue. Qualitative Research, 8, 5-35. Terkelsen, T. B. (2010). Håndtering av engler og UFOer i en psykiatrisk avdeling: En etnografisk studie av hvordan psykotiske uttrykk forstås og kontrolleres [Handling angels and UFOs in
a psychiatric ward: An ethnographic study of how psychotic expressions are understood and controlled] (Doctoral thesis. University of Bergen, Norway). Thornhill, H., Clare, L., & May, R. (2004). Escape, enlightenment and endurance. Anthropology & Medicine, 11(2), 181-199. Zilber, T. B., Tuval-Mashiach, R., & Lieblich, A. (2008). The embedded narrative: Navigating through multiple contexts. Qualitative Inquiry, 14, 1047-1069.
Author Biographies Rita K. Klausen is a PhD candidate at the Department of Health and Care Science at the University of Tromsø (Norway). She is a lecturer in mental health and a member of the Norwegian Association of Family Therapy. Svein Haugsgjerd is a professor at the University of Nordland (Norway), psychiatrist, psychoanalyst, and consultant of residency training at Oslo University Hospital (Norway). Geir Fagerjord Lorem, PhD is an associate professor of the Department of Health and Care Science at the University of Tromsø (Norway). His main interests are health and culture, mental health and ethics.
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Motherhood and mental distress: Personal stories of mothers who have been admitted for mental health treatment
Qualitative Social Work 0(00) 1–15 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1473325015584981 qsw.sagepub.com
Rita K Klausen Department for Health and Care Services, The Arctic University of Tromsø, Norway
Marie Karlsson Karlstad University of Karlstad, Sweden
Dr Svein Haugsgjerd University of Nordland, Center for Practical Knowledge, Norway
Geir Fagerjord Lorem Department for Health and Care Services, The Artic University of Norway, Norway
Abstract There is a need for qualitative studies on motherhood and mental distress. Many mothers have a diagnosis of mental illness, and their motherhood exists in constant tension with their distress. This paper focuses on 10 mothers’ stories about motherhood in relation to being admitted as mental health service users in three different Norwegian community mental health centers. The study has a narrative approach, and through a thematic analysis of personal stories, we emphasize how the 10 women make sense of their experiences of admittance to mental health services in relation to dominant Discourses of good motherhood. Themes identified were: (1) being able to put oneself in the child’s shoes; (2) the emotional impact of being admitted; (3) being open with the children about the admission; and (4) being an emotionally available and present mother. Based on the results of our analysis, we suggest the mothers experienced their distress as a natural reaction to life strains over time, and that they relate to the admissions as interruptions. This underlines the necessity of a more holistic approach, Corresponding author: Rita K Klausen, Department for Health and Care Services, The Arctic University of Tromsø, 9037 Tromsø, Norway. Email:
[email protected]
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with a support system that focuses on both personal and social aspects of motherhood and mental distress. Keywords Women, mental health, thematic analysis, storytelling, patients’ experiences, treatment
Introduction This paper aims to contribute to our knowledge of mothers with a mental illness diagnosis and their experiences of admission for mental health treatment. The personal stories are closely related to dominant Discourses of good motherhood defined in terms of presence, caregiving, and self-sacrifice (Choi et al., 2005). This study utilizes a narrative approach that focuses on the participants’ personal stories and analyzes these stories thematically. Our study describes the mental health service user (MHSU) experience with the support system and provides important clues about admission to mental health services in this group of individuals. In this context, the support system refers to the statutory mental health services and child welfare services rather than community support networks, such as family and friends. The 10 interviews of mothers included in this study are part of a larger research project on MHSU involvement, which included 30 individual interviews with MHSUs of three community mental health centers (CMHC) in Norway. User involvement is a legal right in Norway and can be seen as a means of ensuring the protection of MHSU care and treatment. A central part of user involvement is connected to admissions and opportunities to express these treatment wants and needs. Little research concerning mothers’ experiences with admission to CMHCs has been conducted in Norway. Personal stories can yield important clues regarding the aspects of municipal support for mothers diagnosed with mental illnesses that increase opportunities for recovery from the difficulties and suffering that mental distress can produce. The health care system focuses on the mothers’ illnesses, and they become invisible as women (Chernomas et al., 2000) and mothers. Personal stories provide a nonmedical perspective and present how women make sense of being both mothers and MHSUs, given prevailing norms of good mothering. The mothers’ personal stories of being admitted for mental health treatment can be understood as strongly related to dominant Discourses. The use of the upper case allows differentiation between discourse as talk and Discourse as a body of knowledge. This distinction is an analytic one, which arises from the researcher actively tracing the genealogy of talk (discourse) to a specific body of knowledge (Discourse) (White, 1997: 52–53). The ‘‘ideal’’ mother is one who mothers naturally, who is always and immediately present to care for her children and who does this mothering selflessly (Choi et al., 2005). According to Sevo´n (2011), these Discourses of good mothering are recognized by most Western women regardless of their nationality, ethnicity, class, age, or sexual orientation.
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First, we describe previous research on mothers who have been diagnosed with mental illnesses and then present research on dominant Discourses of motherhood. We describe the data and methods with a focus on personal stories. Then, the participants are presented. Next, we analyze the personal stories thematically. We find these themes to be about mothering in relation to being admitted. The results indicate how mothering by women diagnosed with mental illnesses is created within the Discourses of good motherhood. After a discussion, we offer suggestions for improved clinical practice.
Research on mothers who have a diagnosis of mental illness Women diagnosed with mental illness often need help to reach their potential as mothers; and research about these women is warranted (David et al., 2011). Studies indicate that mothers with mental illness diagnoses report various positive consequences of motherhood, including increased motivation to seek mental health treatment and enhanced ability to address their psychiatric concerns (David et al., 2011). Research also indicates that these mothers want greater recognition of and support for their roles as parents (David et al., 2011). Blegen et al. (2010) conducted a literature review of 19 studies, including quantitative, qualitative, and mixed-methods research, examining mothers with mental illness diagnoses. The authors identify the following three themes in motherhood experiences among the women in these studies: the vulnerability of mothers with mental health problems, the fear of being perceived as not good enough as a mother, and concern that the children might develop mental health problems. Blegen et al. (2010: 527) conclude that the reviewed studies generally view mothers within the dominant medical Discourse ‘‘in which the mothers’’ own voice remained silent. According to Dolman et al. (2013), qualitative research on mothers with mental illness diagnoses has focused on psychopathology and potential harm to children rather than the experiences and attitudes of these women. The authors performed a systematic review of 23 qualitative research studies on motherhood and mental distress and identified the following nine themes of experiences of motherhood and concurrent mental illness: stigma, guilt, custody loss, concern over effect on the child, isolation, coping with dual identities, centrality of motherhood, problems with service provision, and positive aspects of service provision. As the authors conclude, ‘‘research into possible interventions such as preconception counseling, parenting programs and peer support is needed’’ (Dolman et al., 2013: 44I) because these women have particular needs that must be considered by health care professionals. It is not known how many mothers seek help from CMHCs in Norway today. Nevertheless, we consider research that highlights the specific strengths and needs of these mothers to promote effective parenting and thereby improve outcomes for both the mothers and their children (David et al., 2011).
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The dominant Discourse on good motherhood The Discourse on ‘‘good mothering’’ in relation to illness is reflected in several studies (Malacrida, 2009; Montgomery et al., 2006; Power et al., 2011). This discourse may affect how mothers interpret their lives (Sevo´n, 2011). As mothers, they are typically considered responsible for the health and well-being of their children, and they are judged publically on their perceived mothering skills (Malacrida, 2009; Power et al., 2011). The ideal mother ‘‘centers her life around her children to the point of self-sacrifice’’ (Stephens and Breheny, 2013: 24). These aspects of the Discourse on good motherhood are, according to Stephens and Breheny (2013), historical, political, and legal creations that inform personal mother–child relationships in our society. This Discourse provides one idea against which women compare themselves as mothers (Ussher, 1989). Research on mothers with mental illness focuses on maternal characteristics (Montgomery et al., 2006: 21). This focus has led to a neglect of ‘‘other contextual variables of mothering’’ (Montgomery et al., 2006: 21). Over the past decade, scholars have worked to understand the dynamics of motherhood in a broader sense, constructing a more complex understanding of motherhood and motherhood Discourses that both shape and are being shaped by different practices and experiences (Kawash, 2011). We hope that our research contributes to a more complex understanding of motherhood and mental distress.
Data and method The 10 interviews analyzed in this study are part of a larger research project that includes 30 MHSUs at three CMHCs in Norway. The project was approved by the Regional Ethics Committee in 2011. A CMHC is an independent, professional entity that is responsible for a significant part of the general psychiatric services within a geographic catchment area. The MHSUs had experienced considerable changes in their lives because of mental distress, and most of them had been admitted to a psychiatric hospital several times (Klausen et al., 2013). The participants were recruited through a local manager at each center. Information letters were distributed, and individuals who were interested in participating in the study signed letters of consent. The MHSUs could bring a companion if they wished, and some MHSUs brought their contact person from the center. A thematic interview guide was used based on feedback from a pilot interview with an MHSU from a mental health organization. Most of the interviews were approximately 45–60 minutes long. Interviews were digitally recorded, and the sound files were transcribed verbatim. The following transcription conventions were used: an ellipsis. . . indicates a 1 - to 3-second pause; brackets containing an ellipsis [. . .] indicate parts that have been removed; parentheses () provide descriptions of sounds or phrases from the respondent; and brackets [] represent interviewer comments. The stories have been transformed into coherent narratives based on the interviews. This process involves the construction of a comprehensive, condensed narration. Comments or questions from the interviewer has been omitted to improve the
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coherence of the stories. There were 12 men and 18 women among the participants, and 10 of these women were mothers between 31 and 70 years old. Of the mothers, only Ruth was admitted involuntarily at the time of the interview. The main condition for involuntary admission is a serious mental disorder. The patient must also meet one of the two additional conditions: the condition will worsen without treatment and/or the patient might pose a danger to themselves or others (The Directorate for Health, 2006). In Ruth’s case, the dangerousness criterion was not involved. The other mothers were either voluntarily admitted or accessed various services under the auspices of the CMHC. This study employed a narrative approach. Stories are produced, distributed, and circulated in society (Gubrium, 2005). Understanding how stories relate to particular social contexts requires an understanding of what those contexts do with words. The same story can have different meanings in different settings. The social consequences of narratives must be understood in relation to what is at stake in the context of storytelling (Gubrium, 2005). In this study, the narrative approach relied on a thematic analysis of the interviews, which was inspired by the work of Riessman (2008). Telling personal stories opens opportunities to change the past, present, and future by virtue of what the storytellers might want to emphasize in that particular moment. We define the personal stories within our research as topical life stories (Bertaux, 1981) because they focus on a limited period of these women’s lives. Moreover, we draw on Denzin’s (1989: 37) definition of a narrative, ‘‘a story that tells a sequence of events that are significant for the narrator and his or her audience.’’ These personal stories are understood and analyzed in relation to the dominant Discourse on good motherhood. Dominant Discourses are blueprints that offer ‘‘a way of identifying what is assumed to be a normative experience’’ (Andrews, 2004: 1). We view the Discourse on motherhood as inevitably woven into personal stories of the lived experiences of mothering. Traditions, cultural norms, and values related to good motherhood are, to a certain extent, conditional on what is told, why and how (Wiest, 2013). We agree with Stephens and Breheny (2013) that personal stories about experiences of mothering are shaped to fit with or to justify contradictions within these dominant Discourses on good motherhood. Note that we do not view the female participants as carriers of a dominant discourse on good motherhood. Rather, we consider the interview situations as social contexts in which both the interviewer and interviewee draw upon the Discourse as a ‘‘culturally shared stock of knowledge’’ (Mishler, 1999: 10) of what defines good mothering to understand the topics of conversation.
The participants Table 1 presents the 10 mothers in our study. The mothers have been given pseudonyms to protect their identities. The characteristics included in the table are the mother’s age, number of children, and whether they were ever in contact with Child Welfare Services after their first admission. We also include their age at the first
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Table 1. The participants.
Name
Age
Marital status
Child Welfare Services Children involved
Inger
50
Partner 2
Ellinor
Ca.50 Married 2
Karin
44
Single
Elena
37
Partner 3
Helene
36
Single
Sofie
50
Married 6
Marianne 31
Partner 3
Ruth
44
Single
Selma
70
Married 2
Rigmor
50
Partner 4
2
2
3
Age and personal reason for first time in contact with psychiatric services
No, wish they were
35 Request from doctor No, managed without Did not remember their help Threatened suicide Yes 20 Psychosis Yes Lost custody Did not say Lost custody Yes 33 Suicidal, depression, Anxiety Did not say 46 Very tired, depressed Did not say 28 Attempted suicide Yes Did not say Psychosis Received other assistance 65 for her severely Somatically sick with disabled adult daughter stomach pains Did not say 14–15 Drug overdose
admission and the reasons they provided for their first contact with mental health services. Table 1 gives an impression of the participants in the study, and it also helps the reader as he or she reads the different excerpts from the 10 mothers to identify which one is telling her story.
Thematic analysis There are different expressions of thematic analysis from within a broad theoretical framework, and one of the several benefits of thematic analysis is its flexibility (Braun and Clarke, 2006). According to Riessman (2008: 54), a thematic approach is ‘‘suited to a wide range of narrative texts.’’ Considering the mothers’ personal stories within a narrative approach led us to a thematic analysis in which attention was focused on what was said rather than how it was said. Inspired by Riessman (2008), we performed an experience-oriented thematic analysis. We worked with a single interview at a time, isolating and ordering
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relevant episodes into many different themes. After having done this with all 10 interviews, we sharpened our focus and attempted to identify common themes for all of the interviews; particular cases were chosen to illustrate certain patterns in range and variation. A theme ‘‘captures something important about the data . . . and represents some level of patterned response or meaning within the data set’’ (Braun and Clarke, 2006: 82). Using an experience-oriented thematic approach meant that we did not try to fit the data into a preexisting coding frame or any analytical preconceptions. The analysis was, so to speak, driven by the data, the personal stories of the participants and the experiences they focused on in their storytelling. We present excerpts that are followed with interpretation, theoretical formulation, and references to prior theory (Braun and Clarke, 2006: 82). Thus, the analysis is not a linear process; it is a more recursive process (Braun and Clarke, 2006). We moved between the two styles throughout the analysis. This process was central to attempting to understand the personal stories and their complexities of meanings. After having identified four main themes that described the complex relationship between being a mother and being an MHSU, it was interesting to examine the ways in which these maternal experiences correlated with the dominant Discourse on good motherhood defined by presence, caregiving, and self-sacrifice.
Findings During the interviews, it became clear that the women considered their admissions turning points (i.e., significant life experiences). Turning points are episodes during which someone undergoes a change (McLean and Pratt, 2006). These stories are the points at which one comes to understand something new about oneself or faces decisions about different life paths (McLean and Pratt, 2006). Their admissions were points at which these women transitioned from being mothers and members of the community to also becoming MHSUs. Four themes were derived from the analyses, which sought to provide descriptive accounts of the richness, breadth, and complexity of participant experiences of being mothers diagnosed with mental illnesses (Tjofla˚t and Ramvi, 2013). The following themes were identified: (1) being able to put oneself in the child’s shoes; (2) being emotionally affected by the admission; (3) being open with the children about the admission; and (4) being an emotionally available and present mother.
Theme 1: Being able to put oneself in the child’s shoes In their interviews, the women spoke about their ability to identify with the challenges their children face in having a parent diagnosed with a mental illness. The mothers expressed worry about what troubled their children, and they emphasized their need as mothers to minimize the burden of their distress on their children. Women value being good mothers (Tardy, 2000), and being able to put oneself in the child’s shoes is one value for these women within the Discourse on good
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motherhood. One example of this theme is found in an excerpt from Ruth’s story. Ruth’s children live with her for two weeks a month. She reported that they worried a great deal when she was admitted some years ago: I have three kids. I’ve talked a lot with them. They are so big that I have talked a lot with them about things that have happened to me before, and also the suicide attempt I had during a previous coerced admission, so this time I prayed that no one should know that I was involuntarily hospitalized. They were asked to say outwardly that I was voluntarily admitted, so my kids would not be terrified. But I have talked with my kids afterwards, especially my oldest daughter, and she told me she had a suspicion that I was forcibly committed, but this time they could meet me. And then they became very calm. Previously it has. . .I have been denied contact with my kids, and they became very frightened of it. They knew nothing about what happened, and they did not know what shape I was in.
Ruth expressed unease regarding the effect of her admission on her children. Ruth has been open with her children and has told the children about her earlier admissions. This disclosure worried her children, and when she was admitted this time, she wanted to protect her children by saying that she was voluntarily admitted. She also says that her children became frightened when they were unable to maintain contact with her while she was being treated. She wants to protect her children, but she knows that hiding the truth from them will only make things worse. She understands this fact and acts accordingly. She speaks with her oldest child, and the children are able to see her during her treatment. Ruth believes that this contact is good for her children and that being able to see her keeps them calm. Another excerpt that highlighted the same theme came from Ellinor’s story. Ellinor had been depressed for years, and the children never knew what they would find when they came home from school. She had been through many admissions. When we met, both Ellinor and her daughter had been admitted in the same ward. Ellinor said that her children have had a tough life because of her: They’ve probably had it tough. And I think that is reflected today, in my daughter. It is. It is coming. So they’ve had enough, they’ve had a burden, where they’ve had . . . a mother who has been on and off, and they never knew how they would be treated when they came home. True, ‘‘is she screaming? What is she doing?’’ So I think it probably has been pretty tough for them. Although we have not been talking about these things. I think so. This winter I learned in retrospect, I learned in fact just before last summer, she [her daughter] tried to kill herself twice. So how much she knows and how much she snatched up, she has probably heard me say that I want to die. I think so.
Ellinor had tried to protect her children by not talking about her distress at home. Still, she was worried. When Ellinor says that she has learned her lessons in
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retrospect, it is likely that she realizes her impact on the children. She says that her daughter has probably heard her talking about wanting to die and notes that her daughter has also been admitted for mental health treatment. Ellinor blames herself, and one interpretation of this excerpt is that silence in the family is like a Gordian knot, that is, a problem that is insoluble on its own terms. Silence was not protecting the children, but exposing them to her mental distress. When Ellinor notes this effect during the interview, she is able to put herself in her children’s shoes. The excerpts above provide examples of women attempting to maintain silence about their distress to protect their children, but these children had grown frightened of the silence. The material collected during our study indicates that being able to put oneself in the child’s shoes was a shared need expressed by all 10 mothers.
Theme 2: Being emotionally affected by the admission An important value among mothers is being able to take care of their children (Power et al., 2011). This value is underlined by stories of the emotional impact of their admissions. The ripple effects of admissions can be serious; the greatest fear might be losing custody. In their personal stories, the women described setting aside their own needs for their children’s sake. Today, mothers must find ways to merge societal expectations that they are good mothers with accomplishing their roles as members of the society (Tardy, 2000). Our participants told stories about feeling expected to be good mothers and fulfill their roles in society while struggling with their mental distress. Karin talked about restraining herself in meetings with child welfare; she could not tell them how bad she really felt. All they would do is have her admitted, and she was afraid of being away from her son: I feel like with child welfare authorities that they really. . .like follow me with their eyes, how I am, how I seem to be . . . if I have a bad or good day, so I try - yes, to feel good. When I meet them. Afterwards I am totally exhausted.
Karin felt compelled to keep her mental distress hidden in the presence of Child Welfare Services because she was afraid she would lose custody of her son. She describes being in an anxious state whenever she is in contact with the support system. The fear of losing custody, through voluntary relinquishment or by coercion, was described by several participants as related to deep anxiety. Hiding the mental distress that these mothers struggled with became a coping strategy to protect their children. In terms of being a mother who sacrifices everything for her child, Bemiller (2010) emphasizes that mothering is about fulfilling the child’s needs and that a mother does everything for her children, including always being present. Rigmor spoke about hiding from the support system and the community for many years, sacrificing her own needs and health challenges for fear of being
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admitted. She preferred to hide herself in her apartment and not go anywhere. If no one saw her, then no one could say she was mentally distressed. She talked about what would happen with her while she was hiding from everyone: Then, you become so withdrawn, and you stop talking eventually. You hide yourself, and when you come out and are able to talk, you talk too much again. It goes in circles. Because you are sitting and hiding so much inside of you. You can say that I am terrified of the winter darkness. It’s like a big wolf that shall come and take you away.. . .I’m so scared of windows, large windows. You feel that you are being watched all the time.
Being emotionally affected by the admission is described as exhausting by the mothers in this study. Rigmor uses metaphors such as ‘‘winter darkness’’ and ‘‘wolf’’ when she describes hiding from the health care professionals. These terms are both metaphors for loneliness and are often used as symbols of fear, aggressiveness, or hostility. Several mothers spoke about attempting to protect their children from contact with mental health services or Child Welfare Services. The mothers claimed that these worries had exacerbated their fear and anxiety. Protection was part of a negative spiral for several of these mothers. All of the participants told stories about waiting too long to ask for help in their efforts to protect their children.
Theme 3: Being open with children about the admission Our participants emphasized the importance of speaking with children about mental illness diagnoses, and hiding distress from the family was not considered responsible. It was important for our participants to be present mothers, that is, providing caregiving and being responsible. When the women talked about their admissions as turning points in their lives, they were concerned about how they would be perceived by others (Brown, 2013). Marianne’s story addressed how her three children were affected by her mental distress. She wanted the mental health professionals to talk with her children about what was going on. I asked her whether she had missed her children while she was admitted. Yes, of course I did, but I just thought that they needed to speak. As much as I have to go to a psychiatrist or a psychologist and chat, the kids have to be allowed to go . . . they’ve got so many thoughts in their heads, and I was not able to talk like that with them. I had enough with myself. So Elise, the community clinic nurse here at our home—she has been fantastic for them. She had them in conversation until she somehow thought that (pause) that things looked alright.
Marianne emphasizes her children’s need to be listened to by professionals. The children also needed to tell their own stories of their mother’s admission; to talk about their experiences, and Marianne felt unable to speak with them about these
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things. Thus, although she was open with them about her mental distress, she thought they needed more support. Taking good care of the children is inextricably tied to women’s self-worth (Tardy, 2000). Motherhood is a social role that carries momentous moral weight (Malacrida, 2009). Another excerpt that spoke on the same theme came from Elena, whose 17-year-old son came to visit at the CMHC. As she indicates, she wanted peace while she was admitted, but her son was in town and wanted to visit her: I did not say no. They [the professionals working at the center] only explain; they the other patients that ‘‘there will be a boy and . . .’’ I’ll show off the ward and YES. All agreed and no one . . . Yes, for me it was cozy. But he was scared of it; he said, ‘‘typical institution, it is like a prison and . . .’’ but you know young people today (laughs). I [also] have a girl who is 20 and one boy who is 15 (uh). I pull myself away. I pull myself away from the entire contact that—(pause) can make me uneasy because of that. I hear them on the phone, so I do not—I’m so sad. It evokes emotions that hurt.
Even though it was difficult to have contact with the children while she was admitted, Elena wanted her son to visit her. She did not hide her mental distress, but let her son talk to the professionals at the center about her diagnosis and her admission. The mothers expressed a need to protect their children from their mental distress, but they also wanted them to know what was happening. When they felt they could not talk with their children about their distress, they sought help from professionals at the CMHC.
Theme 4: Being an emotionally available and present mother The mothers in our study felt that their admissions, rather than their mental distress, had interrupted their lives. They were aware that they needed help, but they did not feel that they belonged in mental health services. They were placed in an environment that was foreign while they needed to be physically present and emotionally available for their children. Emotional availability refers to ‘‘the capacity of a dyad to share an emotional connection and to enjoy a mutually fulfilling and healthy relationship’’ (Biringen and Easterbrooks, 2012: 1). Being an MHSU created fear, anxiety, and feelings of unfamiliarity for all participants. The ripple effects of the admissions had caused major changes in their lives. Being physically separated from their children during treatment made them feel like they were in a strange place. The following was Karin’s response when I asked what would be a good treatment for her: That’s EXACTLY what I am so unsure of, and do I want, do I want to be treated anymore. Am I really patient material? I try living as normally as possible so that no . . . yes, as I said, especially for his [her son] sake . . . yes. Or for the both of us. So I often think that this [her mental distress] is something that will never go away. That I just have to live with it. I have gone to a psychologist for several years and . . . Okay,
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now you sit there and talk and then you go back home and I’m talking with the psychiatric nurse . . . but I’m maybe a little, that I am a little scared, let’s say I have it pretty bad, but I do not say it. . .because of him [her son] and I try to be stronger than I am, maybe.
Karin reflects on her situation and the mental distress she is experiencing as an ongoing challenge. She prefers to be a present mother for her son to being admitted for treatment. She struggles with her distress at home, but she is taking care of her son while she struggles. In the interview with Ruth, she explained that she spent her days in the ward while her children were at school, but was able to spend time with them at home in the afternoons and evenings. For Ruth, this reflected that the professionals in the acute ward understood her needs and were able to accommodate them so that she was able to remain a present mother to her children despite her mental distress. In all the mothers’ stories, the Discourses of good motherhood were evident and there was a need or desire to distance themselves from mental health services if they feared losing custody or involuntary admission. When these women were not treated as mothers first and patients second, they would reject help from any mental health service that did not recognize them as primarily caretakers.
Discussion This paper aims to contribute to our knowledge of mothers diagnosed with mental illness and their experiences with mental health treatment. The participants told personal stories that are interwoven with the Discourse of good motherhood, especially the values of presence, caregiving, and self-sacrifice (Choi et al., 2005). These women’s stories indicated that they perceived themselves primarily as their children’s caretakers (not as MHSUs) and that they understood their distress as natural responses to life strains. In the subsequent discussion, we will examine presence, caregiving, and self-sacrifice in relation to the four themes described above. The importance of presence was underlined in the stories that emphasized the significance of being a mother who wants her children to be involved in their treatment. These women expressed feelings of not belonging to a system that did not view them primarily as mothers. Caregiving is strongly visible in all four themes: attempting to protect their children, setting their own needs aside, waiting as long as possible to contact the support system, and wanting the children and family to be able to be more involved in the treatment. Self-sacrifice was evident in the themes of being able to put oneself in the child’s shoes and the emotional impact of being admitted. These mothers told stories within the good motherhood Discourse, that is, they might need help but are not unsuitable to be mothers. How motherhood is experienced depends on the context within which it occurs, and these mothers insisted on motherhood as a relational process rather than an internal process (Cowdery and Knudson-Martin, 2005). The women in our study illustrate the need for new, flexible definitions of mothers that represent a diversity
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of experiences (Bemiller, 2010). The meaning of mothering must be understood within the mothers’ lived contexts (Montgomery, 2005). Good motherhood can become translated into practices through which the participants see themselves within a recovery frame; keeping close to their children is linked to a sense of being normal, secure, and responsible (Montgomery, 2005). When Ruth could stay at home while she was under coerced treatment and her children were at home with her, she felt that she was participating in her own treatment and that the professionals were taking her motherhood seriously. The mothers looked at their total life situations, not through a clinical lens or from a medical perspective. They made meaning of their experiences within culturally available discourses and drew on existing stories to tell their own. The mothers in our study call for open dialogue with professionals in which losing custody of children and involuntary treatment are not the main topics of discussion. Admission for treatment and disruption of motherhood are characteristic of a traditional style of psychiatric treatment with an individual patient approach. Being separated from their children during treatment caused loss and grief and exacerbated the mothers’ mental distress. Additionally, these mothers seldom had the necessary support to prove that they were adequate mothers (Diaz-Caneja and Johnsen, 2004). According to Alegria et al. (2010), changes are required to develop and implement mental health services that better match diverse families’ unique needs.
Implications for practice The primary issue is to create social environments in municipalities that support mothers with mental illness diagnoses. Their roles as present mothers and caregivers should be discussed during the admission process. A contextualizing of the treatment is needed (Chernomas et al., 2000). The first meeting between the mental health professional and mother must establish these women as mothers and create an environment in which they can continue to be caretakers within the context of having been admitted for mental health services. The dominant Discourse on good motherhood naturally affects mothers with a diagnosis of mental illness. The professionals involved should promote holistic teamwork that includes inpatient, outpatient and community mental health services, child services, and social services (Krumm et al., 2013). The social support system should be open to designing plans in partnership with these women to ensure satisfactory user involvement in treatment. Plans can also include roles for members of community support networks, such as family and friends. Different needs and contexts affect the interpersonal dimension of mental health care (Alegria et al., 2010) and underline the necessity of mental health services and social support systems that focus on the personal and social aspects of both motherhood and mental distress. The mother’s experience-based knowledge of her children and family is central during admission, and it is important to identify the family as a part of the overall clinical picture.
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Paper 3
Social Work in Mental Health
ISSN: 1533-2985 (Print) 1533-2993 (Online) Journal homepage: http://www.tandfonline.com/loi/wsmh20
Shared Decision Making from the Service Users’ Perspective. A Narrative Study from Community Mental Health Centers in Northern Norway Rita K. Klausen PhD, Bodil Hansen Blix PhD, Marie Karlsson PhD, Svein Haugsgjerd & Geir Fagerjord Lorem To cite this article: Rita K. Klausen PhD, Bodil Hansen Blix PhD, Marie Karlsson PhD, Svein Haugsgjerd & Geir Fagerjord Lorem (2016): Shared Decision Making from the Service Users’ Perspective. A Narrative Study from Community Mental Health Centers in Northern Norway, Social Work in Mental Health, DOI: 10.1080/15332985.2016.1222981 To link to this article: http://dx.doi.org/10.1080/15332985.2016.1222981
Accepted author version posted online: 15 Aug 2016. Published online: 15 Aug 2016. Submit your article to this journal
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Date: 16 August 2016, At: 08:22
Shared decision making from the service users’ perspective. A narrative study from community mental health centers in northern Norway.
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Rita K. Klausen, PhD Centre for Care Science North, The Arctic University of Norway UiT, Norway Bodil Hansen Blix, PhD
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Centre for Care Science North, The Arctic University of Norway UiT, Norway. Marie Karlsson, PhD
Department of Education, Uppsala University, Sweden Svein Haugsgjerd
Geir Fagerjord Lorem
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Center for Practical Knowledge, University of Nordland, Bodø, Norway.
Abstract
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Department of Health and Care Sciences, The Arctic University of Norway UiT, Norway.
This article aims to contribute to the understanding of shared decision making as an important aspect of user involvement in mental health care from the perspectives of service users. A
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thematic analysis of interviews with 25 individual service users in three different community mental health centers in Norway identified different understandings of shared decision making. Shared decision making was identified as essential in four contexts: 1) during admission, 2) in individualized treatment, 3) in different treatment contexts, and 4) in user-professional
relationships. We consider shared decision making to be intertwined with treatment from the service user perspective.
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Keywords: Mental health, social work, health care This study focuses on service users’ experiences being involved in decision making while admitted to community mental health centers (CMHCs) or during outpatient care organized by
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CMHCs. In Norway, a CMHC is an independent professional entity responsible for a significant
proportion of the general psychiatric services within a defined geographic area. In recent years, the number of service users living in local communities has increased, and various forms of
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outpatient services have been developed in Norway. The aim of deinstitutionalization is to achieve an ideal represented by freedom and more active social involvement for service users by facilitating as much independence and self-reliance as possible (Lorem, 2006). The increase in multi-professional collaboration across services and stronger expectations of user involvement in
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mental health care increase the need for more knowledge about the practice of shared decision
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making from the service user perspective.
We agree with Rise (2012), who noted that user involvement is founded on shared respect and carried out through dialogue aiming to achieve shared decision making. According to Gudde, Olsø, Antonsen, Rø, Eriksen & Vatne (2013), a deeper understanding of user experiences and
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preferences is important to optimize care. A precondition for user involvement is the acknowledgement of the service user’s experiences and the user as an expert of his/her health,
indicating a more equal status of the knowledge of users and professionals (Solbjør, Rise, Westerlund & Steinsbekk, 2011). Decision making is one of several aspects of user involvement (Storm & Edwards, 2013). Many decisions must be made for both users and professionals about treatment and care during
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admission or in outpatient care. This study aims to contribute to the understanding of user involvement in mental health care. The article examines service users’ experiences of being involved in shared decision making while being admitted to a CMHC or being in outpatient care
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organized by the CMHCs.
Shared decision making and patient rights in Norway
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Shared decision making is related to service user consent. Health care can be given only with the service user's consent, unless there is a legal basis or other valid legal foundation to provide health care without consent (Norwegian Directorate of Health, 2015). The general rule on consent is associated with health legislation in Norway. A person is autonomous and has full
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determination rights with regard to his/her freedom, health and life. This is affirmed in international human rights and in the Norwegian Patient Rights Act (Norwegian Directorate of
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Health, 2015).
Decision-making competence may be considered absent only when the service user is obviously unable to understand what consent entails (Norwegian Ministry of Health and Care Services, 2011). This situation can arise for persons with physical or mental disorders, persons with
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dementia diseases and persons with intellectual disabilities. An assessment of decision-making competence is linked to an assessment of the person's ability to understand. Furthermore, it must be obvious that the person is unable to understand what the rationale for health care is and what consent entails. The service user should also have received sufficient information about his/her health condition, possible causes and prognosis, as well as the possible risks and side effects of health treatment (Norwegian Ministry of Health and Care Services, 2011). The information given
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must be used to establish a basis for discussion as required, and the service user’s degree of understanding is also related to the dissemination of information. This should be adapted to the individual patient's circumstances and needs. In practice, this situation involves consideration of
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the background and circumstances of the service user and his/her illness, age, mental state,
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language, culture and experience. Furthermore, patient consent should not lapse longer than the extent necessary; failure to obtain consent in one area does not mean that consent is not required
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in other areas. In Norway, it is the professional who decides whether the service user is competent to give consent (Norwegian Ministry of Health and Care Services, 2011).
The relation between user involvement and shared decision making
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The degree of user involvement in mental health care ranges from mere information and consultation to real decision-making power (Tambuyzer, Pieters & Van Audenhove, 2011).
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However, many barriers related to inequality impede achieving high-quality care delivery, and the ways in which we organize mental health services can play a significant role in these barriers (Holum, 2012). In a study on user involvement in Norwegian mental health hospitals by Solbjør, Rise, Westerlund & Steinsbekk (2011), the service user and provider perspectives on user
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involvement during episodes of mental illness were investigated. The study concluded that in difficult phases of the illness, user involvement was redefined and weighed against what was perceived to be the user’s best interest. In the study, both users and providers characterized user involvement as challenging when the users suffered from illness symptoms (Solbjør et al., 2011). The study raises an important question: how are users supposed to achieve real involvement if
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the professionals and even the users themselves see “psychiatric patients” as lacking insight during difficult phases of the illness? (Solbjør et al., 2011) According to Thompson (2007), user involvement is co-determined by patients and
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professionals, and it occurs only through the reciprocal relationships of dialogue and shared
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decision making. Shared decision making is one of several care models that account for the service users’ perspectives on their treatment and care. Shared decision making is focused on the
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process of treatment decisions (Storm & Edwards 2013). Shared decision making was initially suggested as an approach to medication management, but the model is also applicable to treatment in general. However, service users are frequently dissatisfied with the level of shared decision making that occurs in mental health (Angell, Matthews, Stanhope & Rowe, 2015). A
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possible reason is that decisions related to mental health issues are often more complex and time consuming and involve more people than merely the doctor and service user (Beitinger, Kissling,
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& Hamann, 2014). Thus, several stakeholders are involved in shared decision making in mental health care. More research is needed to examine users’ perspectives on factors that facilitate or hinder user involvement in treatment decisions in mental health care (Joseph-Williams, Elwyn & Edwards, 2014; McDaid &Delaney, 2011). We seek to contribute to this field of research on
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shared decision making in mental health care.
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Methods
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Personal stories as user involvement experiences
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The stories that people tell about their lives represent a process of meaning making (Josselson, 2011). We consider people’s stories about treatment in CMHCs and in outpatient care as valuable sources of insight about the practice of shared decision making. We follow Denzin
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(1989, p. 37) in his definition of a narrative: “a ‘narrative’ is a story that relates a sequence of events that are significant for the narrator and his or her audience. It has an internal logic that makes sense to the narrator.” The stories presented in this article were constructed during
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interviews between the participants and the interviewer.
We present user perspectives rather than professional perspectives on this topic. We examine
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user involvement in terms of the opportunity to make decisions about treatment. Our research regards personal stories as topical life stories (Bertaux, 1981) because they concern a limited period in the participants’ lives, namely, their stories about shared decision making while being admitted to a CMHC or being in outpatient care organized by CMHCs. Our theoretical position
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within narrative research is oriented toward personal stories as a social practice (Mishler, 1999). We understand the interviews as active text—a place where meaning is co-created and
performed (Denzin, 2001). A story can have different meanings in different settings. The social consequences of narratives must be understood in relation to what is at stake in the storytelling context (Gubrium, 2005). The storied events in this article relate to being admitted to a CMHC or
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being in outpatient care organized by CMHCs, and the article examines service users’ experience or expectations of how to engage in shared decision making concerning their treatment.
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Participants and recruitment This study is based on a larger research project on insight and user involvement among 25 service users at three CMHCs in northern Norway. The 25 participants in the study (16 women
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and nine men) were between 18 and 87 years old. The participants were living in the two northernmost counties of Norway. The participants were recruited through a local research assistant at each CMHC. The focus on insight and user involvement in the study was reflected in the inclusion criteria: the service users should have had experienced considerable changes during
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their lives because of a mental illness, they had been acutely admitted to a psychiatric hospital, and they were able to provide informed consent. Information letters were distributed, and the
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individuals who were interested in participating in the study signed letters of consent. The participants were in different stages of treatment at the time of the interview: some had recently been admitted, and others were in outpatient care.
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Interviews
Qualitative interviews aim to enable a profound understanding of the participants’ opinions,
beliefs, attitudes, experiences, and identities in a particular domain or domains as described by the participants (Kasper, 2015). Our study sought to understand the service users’ experiences on shared decision making. All interviews were conducted by the first author (X). Six of these 25 interviews were conducted in the participants’ homes and had a different character from the
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interviews conducted at institutions. The interviews conducted at the CMHCs were characterized as more akin to a “therapeutic/treatment meeting” because most interviewees seemed to expect it to last 30-45 minutes (which these types of meetings often do), and it occurred at the treatment
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site. The interviews conducted in homes lasted longer. The duration of most interviews was 45–
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60 minutes, and they were digitally recorded.
The interviews began with the open question “Can you tell me what brought you to mental health
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services?” The open questions were designed to elicit a narrative account (Thornhill, Clare, & May, 2004), and the interviewees were invited to speak as freely as possible. The interviews varied in terms of how the participants told their stories. Some told their stories without interruptions, while others needed more assistance. Each new research interview represented new
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stories and a new storytelling (Authors, 2013). The interviews thematically navigated the participants’ experiences of being involved or not involved in their treatment.
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The transcripts were translated from Norwegian to English, keeping the language as close to verbatim as possible. The excerpts presented in this article have been transformed into coherent narratives based on the interviews, a process that involves the construction of a comprehensive, condensed narration. Comments or questions from the interviewer have been omitted to maintain
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the coherence of the stories.
Ethics
The study was approved by the Regional Committee for Medical Research Ethics (reference no.2011/775). Participants were limited to persons capable of giving informed consent. Before each interview, the interviewer, in dialogue with the service user, ensured that the parameters of
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informed consent were clear. The service users could bring a companion if they wished, and some service users brought their contact person from the center. The interviews followed a thematic guide based on feedback from a pilot interview with a service user from a mental health
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user organization.
The
Norwegian
Center
of
Mental
Health
Service
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At several stages in this project, we facilitated service user involvement. We cooperated with User
Competence
(see
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www.erfaringskompetanse.no). We have presented our research project to service user organizations and environments. We consider the personal stories of service users to be an important contribution that offers a broader picture of the complexity underlying user involvement within mental health services. Using personal stories as a point of departure, we
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hope to elucidate how the multi-storied experiences of service users can contribute to the
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experience-oriented knowledge necessary to ensure user involvement.
Thematic analysis
In this work, analysis is not understood as a linear process but is instead present during all stages of the project (Kvale, 1996). Analysis is a recursive process (Braun & Clarke, 2006). Thematic
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analysis can be used within a broad theoretical framework, and one of its benefits is flexibility (Braun & Clarke, 2006). Following Riessmann (2008), we performed an experience-oriented thematic analysis that allowed the data drive the analysis rather than attempting to fit the data into a preexisting coding frame or analytical preconceptions (Authors, 2015). We focused on the content of the stories (Riessman, 2008). The thematic analysis demonstrated the participants’ complex experiences of being service users and their opportunities to engage in decision making
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concerning their own treatment. In the participants’ stories, we were seeking relevant perspectives connected to the practice of shared decision making as aspects of user involvement. We worked with one interview at a time, isolating and ordering the relevant user involvement
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experiences into different contexts (Riessmann, 2008). After performing this procedure with all
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25 interviews, we sharpened the focus and identified shared decision making as essential in four
contexts. Excerpts from nine interviews are included in the following section to illustrate the
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range and variation of experiences related to shared decision making and the complexity of practicing shared decision making in mental health services.
Results
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Through the thematic analysis, we gained a better understanding of shared decision making as an ongoing and joint project between service users and professionals. It is important to develop
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mental health services that support community integration, involvement, and social inclusion for all persons diagnosed with mental illness (Elstad & Hellzén, 2010). However, this objective is not easy to achieve in practice. Hence, it is important to investigate those factors that service users identify as important and central when they are admitted to CMHCs or are in outpatient
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care organized by CMHCs. Participating in treatment decisions is a vital part of user involvement. From the service user perspective, shared decision making is intertwined with treatment and addresses all aspects of admission or outpatient care. We identified shared decision making as essential in four contexts: 1) during admission, 2) in individualized
treatment, 3) in different treatment contexts, and 4) in user-professional relationships.
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1: Shared decision making during admission
In the interviews, the participants described their first meeting with mental health services. Service users have different needs and pathways (Norwegian Ministry of Health and Care
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Services, 2006). For some participants, the need for mental health services emerged from an acute crisis, while for others, admission was the result of long-term thinking and planning.
However, all participants considered their need for mental health services to be caused by
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difficult life events. The admission was the point at which the participants transitioned from being a member of the local community to also becoming a service user within the mental health care setting.
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Helene, a woman in her 50s receiving outpatient care, told about her expectations related to shared decision making during admission. At first, she felt neglected by the professionals, but
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this perception changed during her stay:
I felt I had to nag to get…. [silent] … No, it is not supposed to be like that, that you feel you have to walk around and nag to get people to…[silent] But it became better. […] You ought to think about openness and honesty when working in mental health service. They decided the treatment […], and the user; it was like you could say your opinion, and you sort of…I felt, I felt
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it was a good treatment. I was a part of making the decisions. I LIKED THAT A LOT [silent]. No, it is very important that you are both…both seen and heard. In mental health services. That’s my opinion.
Helene felt seen and heard by the professionals during her admission. Shared decision making is usually very complicated in everyday life in mental health services, both for professionals and users. Our participants emphasized the importance of the first meeting with the professionals and
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whether they felt that the professionals understood the difficulties they were experiencing. The service users’ first admissions and their first encounters with professionals were essential in determining their experiences of being involved in shared decision making.
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Marianne was in her 30s. She described her first meeting with mental health services:
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I had a breakdown; you are supposed to take care of yourself. Until one day it went no further. So I tried to kill myself. And I was in [the psychiatric hospital], and then I was admitted to day
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treatment at the [local] CMHC. And it ... after I was admitted, I have ... yes. Had contact with the municipal mental health services and with the [local] CMHC…yes. It is 3 years ago. My doctor wanted me to go to [the psychiatric hospital], but I was not at first admitted to the psychiatric hospital. It was in relation to the pills I had taken, so ...But I was admitted to the CMHC; it was
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my doctor. But there ... I accepted it right away, then. And wanted it myself. I had a need for help.... I do not know; it was a relief to those around me. I finally realized … (whispers) I needed
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help. Yes. It's the best thing that could happen to me (laughs). Being hospitalized there. The first meeting with the professionals at the CMHC established the trust that Marianne felt was necessary to start the treatment process. She could participate in decisions concerning her treatment immediately through her acceptance of and willingness to receive treatment.
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Aino, a woman in her early 80s, related a quite different story about her first admission. Her first encounter with mental health care services many years ago had deeply affected her. The first time I went to the doctor. Meds. I got some meds; I don’t remember which ones. I was
working in housing for elder people (coughs). I went to the doctor with one of my sisters (her voice is shivering). It was a male doctor. Yes, and when he heard, how, how, how I was –he pointed one of his fingers at my head, like this [shows with a finger on the interviewer’s head].
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That was my first time asking for help. FIRST time getting help. He knows himself what he did, what he meant (her voice is shivering). There was not much consolation in his behavior. On my head. On my forehead.
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Aino felt violated and misunderstood by the doctor who examined her the first time. She could
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not participate in decisions concerning her treatment at the point of admission. Her story shows
how the first meeting with the doctor served to silence her rather than to invite her to become
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involved as a service user. The difference between these two stories reveals some of the complexity regarding shared decision making that can arise during a patient’s first admission. While Marianne accepted her diagnosis immediately, Aino’s story tells us nothing about diagnosis. She felt misunderstood and mistreated. The difference between the two women’s
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stories can also relate to what kind of information they were given at the point of admission. While Marianne accepted her need for help immediately, Aino watched a finger being pointing
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at her head. Aino’s story does not indicate whether she received any relevant information from the doctor whom she met about her mental health problems or why she was admitted. These excerpts demonstrate the significance of the first meeting between the service user and professionals at the mental health hospital or the CMHC. The first meeting lays the groundwork
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for user involvement.
Being admitted and receiving a mental health diagnosis is a significant turning point in an individual’s life. Turning points are episodes in which one gains a new understanding of oneself or faces a decision about different life paths (McLean & Pratt, 2006). Life takes a different turn, and one must determine how to participate in treatment and decisions concerning treatment. To facilitate user involvement from the moment of admission to mental health care, social contexts
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in meetings between new service users and professionals must be created to allow space for different kinds of shared decision making.
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2: Shared decision making in individualized treatment
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The second context in our study relates to those participant stories that underlined how shared
decision making derives from the needs and wishes of the individual. Some time often passed
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before the participants felt able to be involved in decisions concerning treatment. Typically, they felt that they were in need of help and care at the point of admission and were less interested in greater involvement because it felt exhausting. Sometimes, participating in an early stage of admission or in outpatient care meant allowing the professionals to take responsibility for
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treatment.
Ellinor, a woman in her early 50s, had chosen admission to the CMHC rather than
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hospitalization. She stated that the environment at the CMHC was better. Below, she explains how she felt at the CMHC:
I feel safe and…not least because I have been a couple of times in the psychiatric hospital or immediately after the electroconvulsive therapy…and it seemed I was…I was in the emergency
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department for 9 days before I came here. And it was seriously tiring. Of course, it was very hectic [at the psychiatric hospital], and we were all different people and different illnesses, so when I put the bag outside the door, inside the door here [at the CMHC], I said, “Listen. Listen to the silence.” There ... no, I must say that I (takes a deep breath) ... I was in a conversation ...
yesterday. No, the other day and started to sort my problems, you know, and when I said, simply, “I cannot talk about it today.”
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Ellinor was involved in decisions regarding her own treatment through her decision not to talk on that particular day. This choice can be seen as an active decision to choose not to talk to professionals about her problems. This silence differs considerably from the silence in Aino’s
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admission story in which she was silenced by the doctor’s gesture. The participants in our study
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considered letting the professionals make decisions to be an integral part of their treatment. This
was not expressed in their stories as not participating in their own treatment. To make decisions
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should thus be regarded as a relational phenomenon that develops between the individual user and his/her environment. This environment includes the actions and attitudes of those with whom the user relates (McDaid & Delaney, 2011).
Inger is a woman in her mid-50s who should have been discharged already. However, as a
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consequence of her decision to reduce her medication, her condition worsened. It’s hard to say, the disease I have, there is a risk that one gets worse and worse every time you
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get sick, so right now I'm in a very bad period where I don’t quite see how I...how to get out of the situation here [at the CMHC]. So...so .... so, I – earlier it has sort of been more like a manic period, and then I got medication for it, and so I might have been a little edgy, but I've gotten a job and stuff. But this time I have – I have been manic, and so I was a little better, and then I've
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got like a relapse, so right now everything appears to be difficult, and it somehow... this is the worst – the worst period I have had, ever. I have been able to decide that I should cut down on drugs and stuff. But it has made...ehm. The way it looks now is that I am now in worse shape. So it’s not always that this user involvement is THAT good.
Shared decision making is complex and involves more than deciding between different treatment options (Rise, 2012). These excerpts show some of the challenges in mental health concerning
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the individualized practice of shared decision making in mental health care. Each individual service user in our study experienced his/her illness differently and expressed different needs in terms of care. In difficult phases with strong symptoms, safe and predictable care is important. In
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phases with fewer symptoms, increased empowerment and responsibility can be in focus (Rise,
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Westerlund, Bjørgen & Steinsbekk, 2014). Many decisions must be made. Some decisions, such as Ellinor’s, are of a short-term nature, while other decisions, such as Inger’s, have more long-
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term consequences. The decision not to talk about one’s problems or to reduce medication may have negative consequences for the mental health of service users in the immediate situation or in the long term, but these consequences may be difficult to foresee for both the users and professionals in the process of treatment. Ellinor’s and Inger’s stories make visible the need for
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professionals to make different kinds of user involvement available in different ways. Moreover, to facilitate service users’ involvement in treatment decisions, professionals should address
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possible risks and side effects in ways that consider the service users’ individual needs and situation (Norwegian Directorate of Health, 2015). Shared decision making must be individually adapted in mental health services and must consider that individuals are also socially embedded in and formed by the context of their social relationships (Walter and Ross 2013). The stories of
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the participants in our study indicate that services must be individually adapted.
3: Shared decision making in different treatment contexts Many of the participants in our study had planned admissions or outpatient care from their local CMHC. Several received mental health services from both their community and the local CMHC, enabling them to stay home for longer periods. Service users often commute back and
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forth between the hospital and their home. This necessitates new perspectives on user involvement and decisions concerning treatment. As service users navigate the services available during their mental healthcare treatment, continuity is a key component of the delivery of mental
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health care (Newman, O’Reilly, Lee & Kennedy, 2015).
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Tom was a man in his mid-40s living in a small town. He spoke of his mental distress, and he felt
that he had been treated like a “laboratory animal during his career as a mental health patient.”
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Nevertheless, he preferred to be admitted to the CMHC. Tom became worried every time he was at home in outpatient care because he struggled with violent behavior. He would take drugs, drink, and become aggressive:
It's sort of no SUPPORT when you come out. Among other things, when you come home and
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stuff, there's no support there or anything else. There is certainly nothing. That's because of all the cutbacks and the reduction of mental health services. I regret it myself [what I do when I am
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not admitted]; I am like a ticking time bomb. That's why I'm here. Mental health services have changed, and decisions in this new contexts involve multiple treatment options for users. Users consider their entire life situation not through a clinical lens or from a medical perspective (Author, 2015). Treatment decisions for Tom are made in relation to
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his life as a community member, not as a “psychiatric patient.” When he is in outpatient care, he seeks further help to reduce his drug-related behavior. Tom’s story makes relevant the limitations related to treatment in outpatient care. User involvement in terms of making decisions about where to receive the preferred care and support is circumscribed by cutbacks and resource constraints and is thus outside of service users’ control.
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Ellen was a woman in her late 40s, and she had been diagnosed as bipolar. Her experiences as a community member revolved around the shame attached to her manic episodes between admissions. “Nevertheless, it is all about getting out of the CMHC,” she said.
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If I only could have been admitted in X [a neighboring small town], I think that would have been
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PERFECT, not in my hometown. Yes. Because when you get back to yourself, you REGRET
stuff. But they have been good at shielding me. We [Ellen and the mental health professionals]
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went for walks outside the city center, I went swimming with a woman working here, and I got to do that sort of thing…but everybody…it is a SMALL place here. Or small, it’s not that small, but everybody knows the people working here…and then they know I am admitted. And I think that’s TERRIBLE.
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Ellen did not want her community to know about her admissions, and she found it difficult to participate in activities outside the center. If she could have chosen, she would have been
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admitted to another CMHC. Her story show that decisions about where to receive treatment can mean a great deal to service users struggling to manage their identities as community members and as receivers of mental health care. It also shows that professionals can be sensitive to such struggles and can adapt treatment activities to meet service users’ need to keep these identities
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separate.
These excerpts give us an impression of the complex oscillation between being a service user/being an inpatient/being admitted and being a service user/being an outpatient/being at home. The participants in our study were community members who were occasionally in need of mental health care. They expressed an ongoing need for continuity in care and for opportunities to separate their identities as community members and receivers of mental health care. This
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relates to service users’ opportunities to make decisions about where to receive mental health care. Many service users feel stigma about their diagnosis, with consequences for both selfesteem and public esteem (Thesen, 2001). When involved in decisions regarding their own
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treatment, they obviously wanted to make choices that could reduce stigmatization. The service
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users in our study had an urgent need to avoid being perceived as “crazy” by people in their local communities. They wanted everything to be as normal as possible. Being more involved in
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treatment decisions while in outpatient services can be a way of normalizing everyday life.
4: Shared decision making in user-professional relationships
All of the service users in our study spoke extensively about their relations with the
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professionals. Relationships between service users and professionals are a key aspect of user involvement in shared decision making.
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Lars, a man in his late 40s diagnosed with schizophrenia many years ago, spoke of the challenges that the professionals confronted when he was admitted last summer. But then I have been wobbly and unsure of what I wanted, so it has been difficult to ... I'd had an offer of aftercare housing last summer, but then I was not so ready to quit drinking, so – first I
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said yes, then I changed and said no, and so it was. So, you know, I've wobbled very much, even with what I wanted and what I did not. It has not been easy for them [the professionals at the CMHC], and that’s why I have been admitted for such a long time this time.
The service user-provider relationship in mental health care is longitudinal and dynamic (Eliacin, Salyers, Kukla & Matthias, 2015). These relationships and situational contexts of care play a crucial role in service users’ involvement in treatment (Eliacin et al., 2015). Lars’ story about his
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indecisiveness regarding where to receive care shows that user involvement can manifest in an unwillingness to make definite decisions about treatment and in professionals’ practice of allowing for insecurity and changed decisions.
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admission. At the time of the interview, Stein was a man in his 40s.
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A second excerpt is from Stein, who recounted his experience during the first months of
I don’t remember; I guess I was there [at the psychiatric hospital] in (clears his throat) 3 months,
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if I don’t remember it wrongly. And, you know, you are so depressed then, that when it comes to user involvement and these things, you are not capable of…so, in a way, you know, the professionals have to take care of that in a way.
Stein’s description of his first months being admitted to a psychiatric hospital makes relevant the
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choice to allow providers to make decisions about one’s treatment. If professionals attempt to force service users to make decisions about treatment in situations such as that described by
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Stein, the whole idea of user involvement is undermined. Lars’ and Stein’s stories demonstrated that being indecisive about treatment or incapable of being involved at all necessitates flexible relationships between service users and professionals. Professionals who are patient and sensitive to changing situations in treatment may facilitate user involvement in situations of uncertainty,
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even if it involves a silent decision not to become actively involved at all.
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Discussion: User involvement as shared decision
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making
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This article aims to contribute to the understanding of shared decision making as an important
aspect of user involvement in mental health care from the service user perspective. The participants told personal stories that related to shared decision-making processes in their
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everyday experiences receiving mental health services. Our study demonstrates the complexities of shared decision making in various contexts and phases of mental health treatment. We agree with Rise (2012), who noted that the aim of user involvement is to achieve shared decision
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making between users and providers of mental health care. Our results show that although this is a desirable goal, shared decision making must be understood in relation to different situations
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and social contexts. From the participants’ perspective, shared decision making concerns all parts of admission or outpatient services; it cannot be separated as concerning only certain parts or phases of treatment. Shared decision making cannot be reduced to decisions regarding medication or participation in activities during admission. Neither can shared decision making be
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understood as a user’s ability to act in accordance with advice from health professionals (McDaid & Delaney 2011). User involvement is facilitated in processes of shared decision making between service users, providers, other service users and significant others during admission and during outpatient care.
The capacity to make decisions has traditionally been understood as arising from the status of the individual. The psychiatric diagnosis has been a determinant of whether service users can
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participate in decisions concerning their own treatment (McDaid & Delaney, 2011). In a study by McDaid & Delaney (2011) based on interviews with eight persons with experiences with mental health treatment, they found that the participants described how their capacity to participate in
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decisions was reduced by a set of social and environmental factors. These factors were a lack of
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treatment options, lack of trust in the professionals providing information, provision of information in a language they could not understand, side effects of medication, a lack of
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empathy from professionals, a lack of time to process information and decision making, which were also affected by the service user’s social relationships and their environment (McDaid & Delaney, 2011). Moreover, as shown by the contexts presented, the stories from our participants illustrate how shared decision making in treatment is facilitated by the help and support of
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professionals who are sensitive to the needs and wants of individual users.
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Users and professionals often regard shared decision making as professionals’ responsibility to consider users’ best interest during difficult phases of the illness (Solbjør et al., 2011). However, in a relational approach to shared decision making, it is important to underline shared decision making as involving at least two persons, both the user and the provider.
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The participants in our study underlined the importance of shared decision making being relational when they sometimes delegated such decisions to professionals. This relational perspective is not in line with the Patient Rights Act (Norwegian Directorate of Health, 2015), where it is the professional who decides whether the service user is competent to participate in decisions concerning treatment. When practicing shared decision making in mental health care, professional providers of care and treatment should embrace a flexible approach in defining user
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involvement. According to Bee, Brooks, Fraser, & Lovell (2015), professionals use their relational skills as a core facilitator of involvement. Creating better relations between users and professionals can be a step toward developing mental health services that support community
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integration, involvement, and social inclusion for persons with mental health problems (Elstad &
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Hellzén, 2010). A study on carers’ experience with mental health crises by Klevan, Davidson, Ruud and Karlsson (2016) demonstrated that carers draw on their experiences to understand and
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relate to current incidents regarding both their own perspective and the perspective of the person they care for. Making shared decisions involves nonpaternalistic communication between healthcare providers and service users (Beitinger et al., 2014) in which different stakeholders have the right to be heard and to make decisions.
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The participants in our study also underlined the importance of continuity of care during
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admission or outpatient care. While moving between services, service users must crucially to be able to negotiate shared decision making regarding care and treatment with professionals and significant others. Individually tailored high-quality services require a high degree of flexibility (Rise et al., 2014). This underlines shared decision making as an ongoing social process throughout treatment, not simply involving medication or coercion. The Norwegian Patient
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Rights Act emphasizes that decision making competence can be considered absent only when the service user lacks insight (Norwegian Directorate of Health, 2015). This relates to the question
asked by Solbjør et al. (2013) concerning how users are supposed to achieve real involvement if they are defined as lacking insight. When decision making is practiced in terms of being relational and shared, we move the focus from “insight” as a static characteristic of the service
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user assessed by an expert to something that is accomplished through dialogue between parties that both have the service user’s best interests in mind. The personal stories of our participants convey a substantial degree of complexity regarding
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users’ involvement in care and treatment as well as a need for flexibility within both inpatient
and outpatient services from the CMHC. A main finding in our study was the users’ descriptions of dynamic movement between shared decision making in relation to social and situational
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contexts in everyday life. Our study demonstrates that being involved in one’s own treatment means that one might occasionally make bad decisions. This reveals a measure of unpredictability in mental health care that may be difficult to accept for professionals who strive to provide care through controlled routines in predictable contexts. As long as these choices do
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not carry serious risks or danger, the providers should tolerate the possibility that the service user
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might have wishes other than what might seem to be in his/her best interests.
Methodological reflections
This study could be limited by the decision not to invite the interviewees to read the final transcript or to offer their opinions on the written text of the interview (through, for example, a
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second interview, a focus group or another method). Ideally, it is best to validate stories through all stages of analysis, but in this case, our study includes participants who are in a difficult life
situation. If we, as researchers, expect too much of our participants, the threshold could become
too high to participate for some, creating a dilemma. We chose to conduct one interview with each participant in our study: we believe that this made it easier to participate and allowed us to include the contributions of a wider range of service users.
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Closing remarks By using a thematic analysis, we found four shared decision-making contexts in the participants’
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stories. We interpret shared decision making as being intertwined with treatment from the service
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users’ perspective. Our findings are not only relevant to mental health services but also transferable to other disciplines where user involvement is a central topic. For the service user, being involved and participating in decisions is intertwined with the entire treatment process. If
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stakeholders ignore this fact, the risk of violations and poor treatment increases. All stakeholders have a responsibility for shared decision making, even during difficult phases of illness. Further research addressing shared decision making from the user’s perspective is needed, not only
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within the mental health field but also within other disciplines. Through the implementation of shared decision making as social and dynamic processes that are individually adapted,
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intertwined with treatment and understood as a way of normalizing individuals’ everyday lives, our participants’ perspectives can have a real influence on the services provided. References
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Appendix
Appendix 1 a) Information about the decision of Regional Committee for Medical and Health Research Ethics.
Region:
Saksbehandler:
Telefon:
Vår dato:
Vår referanse:
REK nord
Øyvind Strømseth
99299922
05.05.2011
2011/775/REK nord
Deres dato:
Deres referanse:
22.03.2011
Vår referanse må oppgis ved alle henvendelser
Geir Fagerjord Lorem, Universitetet i Tromsø Institutt for helse og omsorgsfag, Universitetet i Tromsø, Breivika 2011/775 Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. Vi viser til søknad om forhåndsgodkjenning av ovennevnte forskningsprosjekt. Søknaden ble behandlet av Regional forskningsetisk komité for medisinsk og helsefaglig forskningsetikk i møtet 14.04.2011. Forskningsansvarlig: Lasse Lønnum Prosjektleder: Geir Fagerjord Lorem Prosjektomtale (original): Bakgrunn:Studien ønsker å undersøke brukernes forståelse av egen helse og behandling. Vi ønsker økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Metode: Studien vil intervjue inntil 30 brukere av distriktspsykiatriske sentre i Troms og Finnmark, i alderen 18-65 år. Dybdeintervju er nødvendig for å få tilgang til brukernes erfaringer fra behandling. Intervjuguiden vil bli behandla i en egen pilotundersøkelse, hvor en bruker som tilhører pasientgruppen vil kunne gi tilbakemelding på intervjuguiden. I intervjuene vil det åpnes opp for brukernes refleksjoner over erfaringen i sin helhet, med et ivaretakende perspektiv Tema for intervjuene: Tanker om egen livssituasjon, brukermedvirkning og kontekstens betydning ( se intervjuguide). Relevans:å fokusere på hvordan innsikt kan fremmes for den enkelte bruker i hverdagen. Denne typen kunnskap vil kunne bidra til utvide synet på ulike måter å aktivisere brukerkompetanse på. Forskningsetisk vurdering De prosjektene som skal fremlegges for REK er prosjekt som dreier seg om "medisinsk og helsefaglig forskning på mennesker, humant biologisk materiale eller helseopplysninger", jf. helseforskningsloven (h) § 2. "Medisinsk og helsefaglig forskning" er i h § 4 a) definert som "virksomhet som utføres med vitenskapelig metodikk for å skaffe til veie ny kunnskap om helse og sykdom". Det er altså formålet med studien som avgjør om et prosjekt skal anses som fremleggelsespliktig for REK eller ikke. I dette prosjektet synes formålet å være å fokusere på økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Komiteen er usikker på om prosjektet er fremleggingspliktig og ber om at prosjektleder utdyper hva man forstår med økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse, sett hen til det som er nevnt over om hvilke prosjekt som er fremleggingspliktige. Herunder om søker på brukernivå ønsker å se på individnivå eller systemnivå. Komiteen har følgende merknader som ønskes besvart før komiteen kan ta endelig stilling til søknaden: 1.
Besøksadresse:
TANN-bygget Universitetet i Tromsø 9037 Tromsø
Telefon: 77644000 E-post:
[email protected] Web: http://helseforskning.etikkom.no/
All post og e-post som inngår i saksbehandlingen, bes adressert til REK nord og ikke til enkelte personer
Kindly address all mail and e-mails to the Regional Ethics Committee, REK nord, not to individual staff
1. 2. 3. 4. 5.
Søknad/protokoll Informasjonsskriv/samtykkeskjema Dispensasjon Forskningsbiobank Koblinger av helseopplysninger
Vedtak Prosjektleders tilbakemelding imøteses. Den videre behandling av prosjektsøknaden vil bli foretatt av full komité Med hjemmel i helseforskningsloven § 10, jfr. forskingsetikkloven § 4, utsettes endelig vedtak i saken. Det bes om tilbakemelding om de merknader som er anført før endelig vedtak fattes. Komiteens leder tar stilling til godkjenning av prosjektet etter mottatt svar. Vi ber om at alle henvendelser sendes inn via vår saksportal: http://helseforskning.etikkom.no eller på e-post til:
[email protected]. Vennligst oppgi vårt referansenummer i korrespondansen.
Med vennlig hilsen, Øyvind Strømseth Senorrådgiver Veronica Sørensen førstekonsulent Kopi til:
[email protected]
Appendix 1 b) Reply to the decision of Regional Committee for Medical and Health Research Ethics.
Tilbakemelding Skjema for tilbakemelding på vedtak i de regionale komiteer for medisinsk og helsefaglig forskningsetikk (REK) Dokument-id: 185477 Dokument mottatt 10.05.2011
Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. 1. Generelle opplysninger
a. Prosjekt Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. Opprinnelig søknad ble behandlet av REK nord Saksnummer 2011/775
Prosjektbeskrivelse Formålet med vår studie er å beskrive og analysere brukernes innsikt i egen lidelse og behandling. Studien søker å få frem brukernes/pasientenes opplevelse, vurderinger, behov og kompetanse i den hensikt å øke kunnskapen om rammebetingelsene for brukermedvirkning. Hensikten er å bidra til å beskrive hva innsikt kan være, og hvordan det kan henge sammen med måten brukeren beskriver seg selv på i sammenheng med behandlingsapparatet.
1. Nåværende forskningsansvarlig Institusjon: Universitetet i Tromsø Kontaktperson: Lasse Lønnum Stilling: Universitetsdirektør Telefon: 77644990 Mobiltelefon: 77644990 E-post adresse:
[email protected]
Initiativtaker er Prosjektleder eller forskningsansvarlig (Bidragsforskning)
Prosjektstart 01.08.2011
Side 1 av 6
Prosjektslutt 31.12.2015
b. Prosjektleder: Navn: Geir Fagerjord Lorem Akademisk grad: Dr Art Stilling: Førsteamanuensis Arbeidssted: Universitetet i Tromsø Arbeidsadresse: Institutt for helse og omsorgsfag Adresse2 Universitetet i Tromsø Adresse3 Breivika Postnummer: 9037 Sted: Tromsø Telefon: 77646533 Mobiltelefon: 97773453 E-post adresse:
[email protected]
2. Tilbakemelding
a. Komiteens vedtak 2011/775 Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. Vi viser til søknad om forhåndsgodkjenning av ovennevnte forskningsprosjekt. Søknaden ble behandlet av Regional forskningsetisk komité for medisinsk og helsefaglig forskningsetikk i møtet 14.04.2011. Forskningsansvarlig: Lasse Lønnum Prosjektleder: Geir Fagerjord Lorem Prosjektomtale (original): Bakgrunn:Studien ønsker å undersøke brukernes forståelse av egen helse og behandling. Vi ønsker økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Metode: Studien vil intervjue inntil 30 brukere av distriktspsykiatriske sentre i Troms og Finnmark, i alderen 18-65 år. Dybdeintervju er nødvendig for å få tilgang til brukernes erfaringer fra behandling. Intervjuguiden vil bli behandla i en egen pilotundersøkelse, hvor en bruker som tilhører pasientgruppen vil kunne gi tilbakemelding på intervjuguiden. I intervjuene vil det åpnes opp for brukernes refleksjoner over erfaringen i sin helhet, med et ivaretakende perspektiv Tema for intervjuene: Tanker om egen livssituasjon, brukermedvirkning og kontekstens betydning ( se intervjuguide). Relevans:å fokusere på hvordan innsikt kan fremmes for den enkelte bruker i hverdagen. Denne typen kunnskap vil kunne bidra til utvide synet på ulike måter å aktivisere brukerkompetanse på. Forskningsetisk vurdering De prosjektene som skal fremlegges for REK er prosjekt som dreier seg om "medisinsk og helsefaglig forskning på mennesker, humant biologisk materiale eller helseopplysninger", jf. helseforskningsloven (h) §2. "Medisinsk og helsefaglig forskning" er i h § 4 a) definert som "virksomhet som utføres med vitenskapelig metodikk for å skaffe til veie ny kunnskap om helse og sykdom". Det er altså formålet med studien som avgjør om et prosjekt skal anses som fremleggelsespliktig for REK eller ikke. I dette prosjektet synes formålet å være å fokusere på økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Komiteen er usikker på om prosjektet er fremleggingspliktig og ber om at prosjektleder utdyper hva man forstår med økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse, sett hen til det som er nevnt over om hvilke prosjekt som er fremleggingspliktige. Herunder om søker på brukernivå ønsker å se på individnivå eller systemnivå. Vedtak
Side 2 av 6
Prosjektleders tilbakemelding imøteses. Den videre behandling av prosjektsøknaden vil bli foretatt av full komité Med hjemmel i helseforskningsloven § 10, jfr. forskingsetikkloven § 4, utsettes endelig vedtak i saken. Det bes om tilbakemelding om de merknader som er anført før endelig vedtak fattes. Komiteens leder tar stilling til godkjenning av prosjektet etter mottatt svar. Vi ber om at alle henvendelser sendes inn via vår saksportal: http://helseforskning.etikkom.no eller på e-post til:
[email protected]. Vennligst oppgi vårt referansenummer i korrespondansen.
b. Komiteens spørsmål eller vurdering I dette prosjektet synes formålet å være å fokusere på økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Komiteen er usikker på om prosjektet er fremleggingspliktig og ber om at prosjektleder utdyper hva man forstår med økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse, sett hen til det som er nevnt over om hvilke prosjekt som er fremleggingspliktige. Herunder om søker på brukernivå ønsker å se på individnivå eller systemnivå.
c. Tilbakemelding til komiteen Avklaring av formål for forskningsprosjekt Bakgrunn og kontekst Vi ser dessverre at det er oppstått uklarhet omkring prosjektets formål og dermed REK søknaden. Spørsmålet REK reiser er om dette er et helsefaglig forskningsprosjekt som omfattes av helseforskningslovens virkeområde. Forskningsprosjektet involverer i alle fall både mennesker og opplysninger disse gir om egen helse og sykdom, spørsmålsstillingen er dermed om dette prosjektet søker ny kunnskap om helse- eller sykdom, og eventuelt på hvilken måte prosjektet kan være relevant for fagområdet. Nettverk for tvangsforskning innen psykisk helsearbeid er etablert ved Universitetet i Tromsø, Institutt for samfunnsmedisin, og består av psykiatere og forskere fra ulike medisinske fakultet i Norge. Nettverket ønsker blant annet å fremme forskning på pasientenes sykdomsinnsikt, samtykkekompetanse, og selvbestemmelse som et av flere prioriterte områder. I strategiplanen sies det: ”I tråd med en utvikling der pasienter har fått større innflytelse over egen behandling og hvor samtykke har fått stadig større betydning som grunnlag for medisinske inngrep, er pasientenes samtykkekompetanse grunnleggende. I psykiatrien blir spørsmålet særlig aktualisert ved at evnen til å forstå sin egen situasjon på en rasjonell måte kan bli påvirket av lidelsen” (www.tvangsforskning.no). Formål med prosjektet Formålet med vår studie er å beskrive og analysere brukernes innsikt i egen lidelse og behandling. Studien søker å få frem brukernes/pasientenes opplevelse, vurderinger, behov og kompetanse i den hensikt å øke kunnskapen om rammebetingelsene for brukermedvirkning. Hensikten er å bidra til å beskrive hva innsikt kan være, og hvordan det kan henge sammen med måten brukeren beskriver seg selv på i sammenheng med behandlingsapparatet. Prosjektet tar altså sikte på å beskrive brukerens perspektiv på samspillet med helsepersonellet. Brukeren som individ må altså forstås i en sosial kontekst og i kontekst av institusjonene som yter helsetjenestene. Vi har et annet delprosjekt som fokuserer på fagutøverperspektivet. Individnivå og systemnivå bør nok dermed ansees som komplementære. Valget av metode følger av formålet. ”Dersom formålet med en studie er å finne ut noe om pasienters og helsepersonells opplevelser eller oppfatninger av sykdom og helsetjenester, og gjerne hvordan de kommuniserer om dem seg i mellom, er ulike kvalitative forskningsmetoder velegnet” (Veiledning for forskningsetisk og vitenskapelig vurdering av kvalitative Forskningsprosjekt innen medisin og helsefag, utgitt av NEM). Videre står det: ”Eksplorerende design er som regel aktuelt ved de fleste kvalitative forskningsprosjekter”. Vi har valgt narrative metoder for intervju og analyse som er både åpne og utforskende i sitt design. Styrken i et slikt design er å åpne opp for rike beskrivelser. Fordelen er at man ikke binder materialet i forhold til teori eller spørsmålsstillinger, ulempen er at man ikke kan utsi noe om innsiktsnivå på individ eller gruppenivå. Prosjektet vil potensielt gi mulighet for å beskrive brukerens innsikt i egen situasjon ut fra deres beskrivelser og vi kan følgelig videreutvikle muligheten for å implementere brukermedvirkning og brukerens perspektiv i klinisk praksis. Kunnskap om innsikt Hvem kan ha nytte av en slik studie? Hva betyr dette i praksis? Vi oppfatter prosjektet som et viktig prosjekt
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av flere grunner. Prosjektsbeskrivelsen forankrer prosjektet både i Samfunnsmessig relevans (gjennom politisk intensjon om å implementere brukermedvirkning) Klinisk relevans (gjennom intensjonen om å aktivere bruker/pasients perspektiv/ønske om å gjøre brukermedvirkning) Vitenskapelig relevans (gjennom potensiell utvidelse av innsiktsbegrepet og kunnskap om rammevilkår for brukermedvirkning innen psykisk helsevern). En grunnantagelse vi jobber ut fra er at det å gjøre brukermedvirkning innen psykisk helsevern støter på helt andre utfordringer enn innen andre deler av helsevesenet pga av lidelsen/sykdommens natur (jfr. nettverk for tvangsforskning). Innsikt er derfor ikke tilfeldig valgt fordi det er nært knyttet til forståelsen av de alvorlige sinnslidelser. Utgangspunktet for studien kan formuleres som et dilemma: På den ene siden uttrykker fagutøvere helt klart idealer om brukerorientert praksis, samtidig etterlyser brukere større grad av medvirkning og innflytelse. Her er det tydelig at det er skjer noe underveis i samspillet. Det er disse prosessene vi ønsker å få bedre kunnskap om. Annen medisinsk forskning og litteratur om innsikt I psykisk helsevern er begreper om innsikt brukt for å beskrive hvordan mennesker med psykiske lidelser forstår sin egen situasjon og lidelse, gjerne omtalt som sykdomsinnsikt. Temaet er imidlertid omdiskutert. Kringlens lærebok i psykiatri viderefører ideen om en tett sammenheng mellom psykoser og sykdomsinnsikt. Mens andre forskere (Grisso og Appelbaum) har forsøkt å frigjøre innsiktsbegrepet fra sykdomsbegrepet og mener at man kan empirisk tilbakevise påstanden om at psykotiske personer mangler innsikt som sådan. Sammenhengen mellom innsikt og psykoser begrunnes også noe ulikt i litteraturen. Noen beskriver manglende sykdomsinnsikt som et definerende trekk ved psykose, mens andre ser svekket eller manglende innsikt som et resultat av en underliggende psykisk forstyrrelse. Nyere medisinske forskningsprosjekt på sykdomsinnsikt kobler ofte innsikt direkte til samtykke- eller beslutningskompetanse. Kjernespørsmålene er da evnen til å forstå relevant informasjon, anerkjenne behov for hjelp, anvende informasjonen på egen situasjon og uttrykke et informert valg. Innsikt i betydningen samtykkekompetanse nevnes spesifikt i forbindelse med unntaket fra hovedregelen for samtykke for helsehjelp (pasientrettighetsloven § 4). Det er også relevant for berettigelsen av tvang innen psykisk helsevern. Det tidligere forskningsprosjektet ”Innsikt og samtykkekompetanse” hadde denne sammenkoblingen av innsikt og samtykkekompetanse som utgangspunkt. Det vi imidlertid fant ut var at situasjoner der innsikt hadde vært tematisert innebar langt flere aspekter enn det som dekkes av innsikt som beslutningskompetanse eller anerkjennelse av hjelpebehov. Det betyr i praksis at klinikerne i studien forholdt seg til problematikken på en langt mer fleksibel måte enn litteraturen skulle tilsi. Man kunne f eks anerkjenne en pasients strategier for å mestre symptomer eller livssituasjon som tegn på innsikt, selv om det ikke nødvendigvis var uttrykt gjennom et valg eller en beslutning. Helt uproblematisk var det ikke. Behandlerne har gjennom dette begrepsapparatet stor definisjonsmakt hvis innsiktsbegrepet blir tøyelig. Det var særlig tydelig i konfliktfylte situasjonsbeskrivelser når for eksempel atferd og oppfatninger av egen situasjon gikk på tvers av behandlingssystemets vurderinger ble beskrevet som manglende sykdomsinnsikt. Studiens begrensning var også at den kun inkluderte helsepersonell. Vi mangler også observasjonsdata. Studien vi nå ønsker å igangsette søker gjennom to delprosjekt å bidra med å gi utvidede beskrivelser av innsiktsbegrepet basert på data fra både pasient/brukere og fagutøvere. Prosjektet det her er spørsmål om inkluderer pasientperspektivet. Vi har valgt brukermedvirkning, og ikke tvang eller opplevelse av tvang, for også å inkludere eksempler der brukers innsikt i egen situasjon har fått gjennomslag og kanskje innebåret endringer i forhold til individuell plan, alternative tiltak eller praktiske tilpasninger. Kunnskap om innsikt har også relevans i forhold til sentrale sykdomsbegrep, samt at det har implikasjoner for vurdering av pasienten særlig ved vegring/nekting av behandlingstiltak. Det å støtte brukermedvirkning vil bidra til en bedre kvalitet på omsorgen for brukere med alvorlige psykiske lidelser ved at de kan få en mer aktiv og deltagende rolle i forhold til avgjørelser som berører egen situasjon. Vi har f eks planer om i etterkant av studien å etablere samarbeid med et eller to sykehus i landsdelen for implementering av resultatene fra studien i klinisk praksis. Dette kan bidra til å utvide kunnskap grunnlaget og kvalitetsutvikle det akuttpsykiatriske tilbudet i spesialisthelsetjenesten og kommunehelsetjenesten. Framgangsmåten er basert på aksjonsforskning, utviklet av Jan Kåre Hummelvold, der det anvendes arbeidsgrupper sammensatt av helsepersonell, brukere og forskere. Intensjonen er teoretisk og praktisk
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fagutvikling med tanke på å beskrive, analysere og forbedre rutiner, begrep og handlinger som stimulerer til økt bruk av brukermedvirkende arbeidsformer i praksis. Dette metodevalget støtter opp om brukermedvirkning ved at brukerne selv får en aktivt deltagende rolle i et prosjektet som direkte berører egen situasjon. På den måten bidrar brukeren selv til å utvikle en bedre kvalitet på forskningen, omsorgen og behandlingen til personer med alvorlige psykiatriske lidelser, sammen med helsepersonalet i psykisk helsevern. Vi ser dette som et mulig post.doc-prosjekt som en oppfølging til studien. Avslutning Sykdomsinnsikt er sentralt i sykdomsbegrepene innen psykiatrien, særlig psykosebegrepet Innsikt er sentralt for vurderingen av pasientens forhold til egen situasjon, sykdom og behandlingstilbud, og da særlig med hensyn til mestring og etterlevelse. Innsikt, og da særlig i betydningen beslutningskompetanse, er sentralt i begrunnelsen for bruken av tvang og muligheten for brukermedvirkning Hovedformålet er dermed knyttet til annen medisinsk og helsefaglig forskning som fokuserer på innsikt. Vi har en relasjon til nettverk for tvangsforskning innen psykisk helsevern. Vi mener også at prosjektets formål faller innenfor helseforskningsloven. Resultat fra tidligere studie gir også håp om å gi ny, supplerende kunnskap på dette området. Vi tror også at resultatene kan gi kunnskap som kan bedre dialogen mellom bruker og helsepersonell. Argumenter for fremleggsplikt er derfor at Vi søker ny helserelatert kunnskap hvor bruk av intervjudata om deltagernes helse og sykdomserfaringer står sentralt i prosjektet. Prosjektet søker å frambringe ny kunnskap om helserelaterte og sykdomsrelaterte forklaringer som er relevante for brukermedvirkning. eventuelle tiltak og råd i forhold til brukermedvirkning innen psykisk helsevern som kan fremkomme av prosjektet, kan få klinisk betydning og forankring i helsevesenet. Ut fra argumentasjonen ovenfor mener vi at prosjektet hører best hjemme innen helseforskningsloven, snarere enn f eks inn under NESH eller NSDs fagområder. HOD har gjentatt uttrykt at helseforskningslovens virkeområde skal forstås vidt. NEM oppfordrer derfor REK til en romslig tolkning av fremleggelsesplikten der man, som regel, i tvilstilfeller tar prosjekt-søknader til behandling (NEM BS 13 2010/137). En viktig årsak til at vi håper at REK vil behandle saken er at forskningen skal foregå hos en sårbar pasientgruppe. REK har den beste kompetanse i forhold til å vurdere forsvarligheten av forskning innen dette empiriske feltet. Jeg vil følgelig, som prosjektsleder, føle meg tryggere på de godkjenninger og begrensinger REK ville pålegge oss som forskningsgruppe. Jeg har etter beste evne forsøkt å besvare spørsmålsstillingen REK har reist gjennom å tydeliggjøre både problemstillinger og forskningsmiljøet knyttet til formålet. Hvis ønskelig, kan jeg gjerne møte for komiteen og besvare eventuelle spørsmål dere måtte ha for ytterligere utdypning. Vennlig hilsen Geir Lorem Førsteamanuensis Prosjektsleder
d. Dokumentasjon Annen dokumentasjon vedlegges Svarbrev
3. Vedlegg
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#
Type
1. Annen dokumentasjon
Filnavn
Lagt inn dato
svar REK .doc
10.05.11
4. Ansvarserklæring
Jeg erklærer at prosjektet vil bli gjennomført i henhold til gjeldende lover, forskrifter og retningslinjer Jeg erklærer at prosjektet vil bli gjennomført i samsvar med opplysninger gitt i opprinnelig søknad og tilbakemeldingen til komiteen Jeg erklærer at prosjektet vil bli gjennomført i samsvar med eventuelle vilkår for godkjenning gitt av REK eller andre instanser
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Appendix 1 c) Approval Regional Committee for Medical and Health Research Ethics.
Region:
Saksbehandler:
Telefon:
Vår dato:
REK nord
Veronica Sørensen
77620758
24.06.2011
Vår referanse:
2011/775/REK nord
Deres dato:
Deres referanse:
22.03.2011 Vår referanse må oppgis ved alle henvendelser
Geir Fagerjord Lorem Institutt for helse og omsorgsfag, Universitetet i Tromsø, Breivika 2011/775 Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. Vi viser til søknad om forhåndsgodkjenning av ovennevnte forskningsprosjekt. Søknaden ble behandlet av Regional komité for medisinsk og helsefaglig forskningsetikk i møtet 16.06.2011. Forskningsansvarlig: Gyrd Thrane Prosjektleder: Geir Fagerjord Lorem
Prosjektomtale Bakgrunn:Studien ønsker å undersøke brukernes forståelse av egen helse og behandling. Vi ønsker økt kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Metode: Studien vil intervjue inntil 30 brukere av distriktspsykiatriske sentre i Troms og Finnmark, i alderen 18-65 år. Dybdeintervju er nødvendig for å få tilgang til brukernes erfaringer fra behandling. Intervjuguiden vil bli behandla i en egen pilotundersøkelse, hvor en bruker som tilhører pasientgruppen vil kunne gi tilbakemelding på intervjuguiden. I intervjuene vil det åpnes opp for brukernes refleksjoner over erfaringen i sin helhet, med et ivaretakende perspektiv Tema for intervjuene: Tanker om egen livssituasjon, brukermedvirkning og kontekstens betydning ( se intervjuguide). Relevans:å fokusere på hvordan innsikt kan fremmes for den enkelte bruker i hverdagen. Denne typen kunnskap vil kunne bidra til utvide synet på ulikemåter å aktivisere brukerkompetanse på. Tilbakemelding Prosjektleder har gitt en grundig tilbakemelding på komiteens anførsler. Sykdomsinnsikt er sentralt i sykdomsbegrepene innen psykiatrien, særlig psykosebegrepet, og er således sentralt i begrunnelsen for bruken av tvang og muligheten for brukermedvirkning. Komiteen finner at prosjektet faller innenfor helseforskningsloven. Samtykkekompetanse Forskning som inkluderer personer uten, eller med redusert samtykkekompetanse, kan bare finne sted dersom eventuell risiko eller ulempe for personen er ubetydelig, personen selv ikke motsetter seg det, og det er grunn til å anta at resultatene av forskningen kan være til nytte for den aktuelle personen eller for andre personer med samme aldersspesifikke lidelse, sykdom skade eller tilstand. Det må heller ikke være grunn til å tro at personen ville motsatt seg deltakelse i forskningsprosjektet hvis vedkommende hadde hatt samtykkekompetanse. Det er også et krav at tilsvarende forskning ikke kan gjennomføres på personer med
Besøksadresse:
TANN-bygget Universitetet i Tromsø 9037 Tromsø
Telefon: 77644000 E-post:
[email protected] Web: http://helseforskning.etikkom.no/
All post og e-post som inngår i saksbehandlingen, bes adressert til REK nord og ikke til enkelte personer
Kindly address all mail and e-mails to the Regional Ethics Committee, REK nord, not to individual staff
samtykkekompetanse. Søker har i hovedsøknaden redegjort godt for hvordan disse hensynene skal ivaretas i prosjektet. Den som skal være i kontakt med deltakerne har også bred klinisk erfaring for å kunne gjøre de nødvendige vurderinger underveis i studien. Komiteen har ingen merknader til prosjektsøknaden. Komiteen har ingen merknader til informasjonsskriv og samtykkeerklæring. Vedtak Med hjemmel i helseforskningsloven § 10, jfr. forskingsetikkloven § 4 godkjenner komiteen at prosjektet gjennomføres i samsvar med det som framgår av søknaden. Godkjenningen av prosjektet gjelder til 31.12.2015. Av dokumentasjonshensyn skal opplysningene likevel bevares inntil 31.12.2020. Opplysningene skal deretter slettes eller anonymiseres, senest innen 30.06.2021. Opplysningene skal lagres avidentifisert, det vil si adskilt i en nøkkel- og en opplysningsfil. Forskningsprosjektets data skal oppbevares forsvarlig, se personopplysningsforskriften kapittel 2, og Helsedirektoratets veileder for «Personvern og informasjonssikkerhet i forskningsprosjekter innenfor helseog omsorgssektoren». Prosjektet skal sende sluttmelding til REK nord på fastsatt skjema senest 30.06.2016. Tillatelsen er gitt under forutsetning av at prosjektet gjennomføres slik det er beskrevet i søknaden og protokollen, og de bestemmelser som følger av helseforskningsloven med forskrifter. Dersom det skal gjøres endringer i prosjektet i forhold til de opplysninger som er gitt i søknaden, må prosjektleder sende endringsmelding til REK. Vi gjør oppmerksom på at hvis endringene er "vesentlige", må prosjektleder sende ny søknad, eller REK kan pålegge at det sendes ny søknad. Vi ber om at tilbakemeldinger til komiteen og prosjektendringer sendes inn på skjema via vår saksportal: http://helseforskning.etikkom.no. Øvrige henvendelser sendes på e-post til
[email protected]. Vennligst oppgi vårt referansenummer i korrespondansen. Med vennlig hilsen, May Britt Rossvoll Kontorsjef Veronica Sørensen Førstekonsulent Kopi til:
[email protected],
[email protected]
Appendix 1 d) Application for extension Regional Committee for Medical and Health Research Ethics.
Prosjektendring Skjema for søknad om godkjenning av prosjektendringer i de regionale komiteer for medisinsk og helsefaglig forskningsetikk (REK) 2011/775-16 Dokument-id: 683044 Dokument mottatt 07.01.2016
Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. (2011/775) 1. Generelle opplysninger
a. Prosjektleder Navn:
Geir Lorem
Akademisk grad:
Dr Art
Stilling:
Professor
Hovedarbeidsgiver
UiT The arctic university of Norway
Arbeidsadresse:
Institutt for helse og omsorgsfag
Postnummer
9037
Sted
Tromsø
Telefon
77646533
E-post adresse
[email protected]
b. Prosjekt Hvilket prosjekt skal endres?
Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. (2011/775)
c. Ny Prosjektleder? Skal prosjektet ha ny prosjektleder?
Nei
Side 1 av 3
d. Forskningsansvarlig(e) Forskningsansvarlig(e) som beholdes Institusjon
Kontaktperson
Stilling
E-post adresse
Universitetet i Tromsø, Helse- og omsorgsfag
Gyrd Thrane
Instituttleder
[email protected]
e. Prosjektmedarbeider(e) Ingen prosjektmedarbeidere
2. Endring(er)
a. Endringen(e) innebærer
Endring av prosjektstart og prosjektslutt Prosjektstart
24.06.2011
Prosjektslutt
31.12.2016
b. Begrunnelse for endringen(e) Praktisk, faglig og vitenskapelig begrunnelse for endringen(e) Vi ønsker å oppbevare data tilhørende prosjektet til 31.12.2016. Dette på grunn av forsinkelser i prosjektet. 2 artikler basert på dette prosjektet er publisert i internasjonale tidsskrifter (nivå 2); Qualitative Inquiry og Qualitative Social Work. Arbeidet med sammenskrivingen av prosjektet er nesten ferdigstilt, og hovedbegrunnelsen for forsinkelsen er at den tredje artikkelen som skal inn i avhandlingen har tatt lengre tid å få publisert. Denne artikkelen var inne til review i et nordisk tidsskrift som brukte 13 måneder på å gi oss tilbakemelding. Dette forsinket oss kraftig. Etter vurderinger så vi oss nødt til å omarbeide teksten, og denne er nå sendt inn til et internasjonalt tidsskrift (Social Work in Mental Health) og vi venter på en ny vurdering. Arbeidet som gjenstår er altså publiseringen av denne teksten, og å avslutte sammenskrivingen.
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3. Avveining av nytte og risiko ved prosjektendringene
Hvorfor er det forsvarlig å gjennomføre endringene? Gi en begrunnet avveining av fordelene og ulempene ved prosjektendringene. Av hensyn til deltagerne ønsker vi å beholde koblingsnøkkel og samtykkeskjema til avhandlingen er levert. Ulempen ved dette er at vi beholder personidentifiserbare opplysninger lengre enn avtalt, men fordelen er at deltagerne har mulighet til å ta kontakt (og eksempelvis få slettet data dersom ønskelig) helt frem til den siste artikkelen er publisert.
4. Vedlegg
Ingen vedlegg
5. Ansvarserklæring
Jeg erklærer at prosjektet vil bli gjennomført i henhold til gjeldende lover, forskrifter og retningslinjer i samsvar med opplysninger gitt i denne søknaden i samsvar med eventuelle vilkår for godkjenning gitt av REK
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Appendix 1 e) Approval of extension Regional Committee for Medical and Health Research Ethics.
Region:
Saksbehandler:
Telefon:
Vår dato:
Vår referanse:
REK nord
Monika Rydland Gaare
77620756
13.01.2016
2011/775/REK nord
Deres dato:
Deres referanse:
07.01.2016
Vår referanse må oppgis ved alle henvendelser
Geir Lorem Institutt for helse og omsorgsfag 2011/775 Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted. Et narrativt prosjekt. Forskningsansvarlig: Universitetet i Tromsø Prosjektleder: Geir Lorem Vi viser til søknad om prosjektendring datert 07.01.2016 vedrørende forlengelse av prosjektperiode/oppbevaring av data for ovennevnte forskningsprosjekt frem til 31.12.2016. Søknaden er behandlet av Regional komité for medisinsk og helsefaglig forskningsetikk (REK nord) ved sekretariatsleder på fullmakt gitt av komiteen med hjemmel i forskningsetikkforskriften § 10 annet ledd. Av informasjonsskrivet til deltakerne fremgår det at studien skulle avsluttes i 2015 og at navnelistene da ville bli slettet. Under forutsetning av at de inkluderte må informeres om forlenget oppbevaring av data er det fattet slikt vedtak Med hjemmel i helseforskningsloven § 11 godkjennes prosjektendringen. Endringen godkjennes under forutsetning av at prosjektet gjennomføres slik det er beskrevet i søknaden, endringssøknaden, oppdatert protokoll og de bestemmelser som følger av helseforskningsloven med forskrifter. For øvrig gjelder de vilkår som er satt i forbindelse med tidligere godkjenning av prosjektet. Sluttmelding og søknad om prosjektendring Prosjektleder skal sende sluttmelding på eget skjema senest et halvt år etter prosjektslutt, jf. helseforskningslovens § 12. Dersom det skal gjøres vesentlige endringer i forhold til de opplysninger som er gitt i søknaden må prosjektleder sende søknad om prosjektendring til REK, jf. helseforskningslovens § 11. Klageadgang Du kan klage på komiteens vedtak, jf. forvaltningslovens § 28 flg. Klagen sendes til REK nord. Klagefristen er tre uker fra du mottar dette brevet. Dersom vedtaket opprettholdes av REK nord, sendes klagen videre til Den nasjonale forskningsetiske komité for medisin og helsefag for endelig vurdering. Med vennlig hilsen May Britt Rossvoll sekretariatsleder Besøksadresse:
MH-bygget UiT Norges arktiske universitet 9037 Tromsø
Telefon: 77646140 E-post:
[email protected] Web: http://helseforskning.etikkom.no/
All post og e-post som inngår i saksbehandlingen, bes adressert til REK nord og ikke til enkelte personer
Kindly address all mail and e-mails to the Regional Ethics Committee, REK nord, not to individual staff
Monika Rydland Gaare rådgiver Kopi til:
[email protected]
Appendix 1 f) Letters to the participants concerning extension of the study
Appendix 2 Information letter to managers of community mental health centers
INFORMASJONSSKRIV TIL DISTRIKTSPSYKIATRISKE SENTER ……. AVDELING …. Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted.
Kriterier for deltakelse: Studien søker inntil 30 deltakere fra pasientgruppen med psykiske lidelser fra 18 – 65 år, og begge kjønn ønskes representert. Det er en forutsetning at studiens deltakere har relevant erfaring i form av en eller flere sykehusinnleggelser. Brukerne er knytta til DPS, enten døgnenhet eller voksenpsykiatrisk poliklinikk. Bakgrunnsinformasjon om studien: Hensikten med denne studien er å undersøke brukernes innsikt i egen lidelse og behandling. Studien ønsker å bidra til å gi et språk som omhandler hva innsikt kan være, og hvordan det kan henge sammen med måten brukeren beskriver seg selv på i sammenheng med behandlingsapparatet. Prosjektet vil arbeide med å ved å vektlegge kommunikasjon som griper fatt i brukerens kompetanse på seg selv og sin helse. Studien ønsker å fokusere på hvordan innsikt kan fremmes for den enkelte bruker i hverdagen. Denne typen kunnskap vil kunne bidra til utvide synet på ulike måter å aktivisere brukerkompetanse på.
Hva skal studiedeltakeren være med på? Studien søker deltakere som vil la seg intervjue med lydopptaker. Intervjuene er regna å ta mellom 1 til 1,5 timer. Det vil være en prosjektmedarbeider som gjennomfører intervjuene, og deltakerne kan, dersom ønskelig, ha med seg en støtteperson under selve intervjuet. Studiet vil bli gjennomført i tråd med forskningsetiske retningslinjer der taushetsplikten overholdes, opplysninger anonymiseres, deltagelse er frivillig og det innhentes informert samtykke fra brukeren. Dersom bruker har redusert samtykke, eller er umyndiggjort, tas dette hensyn til og aktuelt personale eller verge tas kontakt med dersom bruker har ønske om å delta i prosjektet. Mulige fordeler ved deltakelse:
Informanten har ingen direkte fordeler ved å delta i studien. Det kan være motivert egeninteresse å formidle egne erfaringer med helsetilbudet i forhold til et forskningsprosjekt. Pasientene kan verdsette å få tematisert
forhold som ellers ikke snakkes om i en behandlingssammenheng. En samtale med en utenforstående (her forskeren)om situasjoner man har opplevd som vanskelige/ krenkende kan oppleves som både interessant og forløsende i forhold til refleksjoner rundt egen erfaring. Erfaringskunnskap kan vekke engasjement hos den enkelte pasient, og skape rom for samtaler med eksempelvis helsepersonell. Mulige ulemper ved deltakelse: Hva gjelder ulemper for den enkelte, vil informanten gjennom intervjuet blottstille noe av seg selv. Det kan i gitte tilfeller være belastende å snakke om forhold som berører egen sykdom og behandling, mulige vanskelige og/ eller krenkende erfaringer. Dette fordrer en særskilt etisk bevissthet hos intervjuer. Dersom det skulle oppstå behov, vil intervjuer kunne formidle hjelp, oppfølging eller andre tiltak som vil være nødvendig. Det er viktig at informanten er forstått med at dette som skjer er en del av forskning, og ikke behandling. Forskningsetikk Deltakerne vil bli bedt om å undertegne en samtykkeerklæring slik at samtykke til deltakelse er frivillig og informert. Det er sentralt at deltakerne er kjent med at intervjuet er en del av et forskningsprosjekt og ikke vil ha betydning for deres behandling på tidspunktet for intervjuet. Deltakerne kan når som helst avbryte intervjuet, og intervjuer vil kunne stoppe intervjuet, dersom deltakeren viser tegn til å ikke være komfortabel i situasjonen. Det vil påpekes til deltaker at intervjuet ikke vil få negativ innvirkning på deres behandling. Det samme gjelder dersom de ønsker å avbryte deltakelse i studien. Prosjektet er godkjent av Regional komitè for medisinsk og helsefaglig forskningsetikk, Nord- Norge (REK Nord) 24.06.2011. For ordens skyld, er godkjenningen fra REK vedlagt. Personvern Alle opplysninger som samles inn vil avidentifiseres, og kun brukes slik som beskrevet i hensikten med studien. All informasjon vil bli behandlet uten navn og fødselsnummer eller andre direkte gjenkjennende opplysninger. Det vil være en kode som knytter deltakeren til personlige opplysninger, og det er kun prosjektleder og intervjuer som vil kjenne til denne kodingsnøkkelen. Det vil ikke være mulig å identifisere deltakerne i resultatene av studien når disse publiseres. Universitetet i Tromsø ved administrerende direktør er databehandlingsansvarlig. Etter gjennomføring av intervjuene vil deltakerne, dersom de ønsker det, få tilsendt en kort oppsummering av funn og et antall eksemplarer av avhandlingen til det aktuelle distriktspsykiatriske senteret etter disputas.
Dersom de trekker seg fra studien, kan de kreve å få slettet innsamlede data, med mindre opplysningene allerede er inngått i analyser eller brukt i vitenskapelige publikasjoner.
Studien er finansiert gjennom forskningsmidler fra Universitetet i Tromsø, Institutt for helse- og omsorgsfag.
Rita K. Klausen Stipendiat Humanistisk helseforskning
Appendix 3 Information letter and consent form
Forståelse av innsikt og brukermedvirkning
Forespørsel om deltakelse i forskningsprosjektet ”Innsiktens skjulte natur? Forståelse av innsikt og brukermedvirkning sett fra brukerens ståsted.”
Bakgrunn og hensikt Dette er et spørsmål til deg om å delta i en forskningsstudie for å undersøke brukernes forståelse av egen helse og behandling. Vi ønsker kunnskap om brukermedvirkning med særlig vekt på innsikt og sykdomsforståelse. Vi har tatt kontakt med deg fordi du har erfaring fra å være en bruker av distriktspsykiatriske tjenester. Vi ønsker å spørre deg om dine erfaringer i forhold til din egen rolle i behandlingen og brukermedvirkning. Universitetet i Tromsø ved institutt for helse- og omsorg er ansvarlig for dette prosjektet. Hva innebærer studien? Studien innebærer at en kontaktperson ved din DPS henvender seg til deg, og spør om du kan være interessert i å delta i en studie om brukermedvirkning. Kontaktpersonen vil informere deg om hva studien handler om, og det å delta i studien innebærer at vi ønsker å gjennomføre et intervju med deg hvor vi ønsker å spørre deg om spørsmål som har med behandling og brukermedvirkning å gjøre. Vi tar deretter kontakt med deg for å avtale et intervju. Vi vil komme til deg/ stedet der du bor for å gjennomføre intervjuet. Intervjuet planlegges å ha en varighet på inntil 1- 1,5 timer, og krever ingen forberedelser fra din side. Mulige fordeler og ulemper Utover den tiden som går med til selve intervjuet, vil ikke deltakelsen innebære noen direkte ulemper for deg. Det kan oppleves som ubehagelig å snakke om slike forhold fordi det er personlig, men husk at det er du som setter grenser for hva du ønsker å fortelle og hva du ikke vil snakke om. Dine grenser vil bli respektert. Fordelen med å delta er at dine erfaringer kan bidra til økt kunnskap som på sikt kan medvirke til at praksis kan forbedres. Hva skjer med informasjonen om deg? Informasjonen som registreres om deg skal kun brukes slik som beskrevet i hensikten med studien. Alle opplysningene vil bli behandlet uten navn og fødselsnummer eller andre direkte gjenkjennende opplysninger. En kode knytter deg til dine opplysninger gjennom en navneliste. Det er kun autorisert personell knyttet til prosjektet som har adgang til navnelisten og som kan finne tilbake til deg. Når studien avsluttes, i 2015, vil navnelistene slettes. Informasjonen vil lagres i anonymisert form med tanke på eventuell oppfølgingsstudie. Det vil ikke være mulig å identifisere deg i resultatene av studien når disse publiseres.
Frivillig deltakelse Det er frivillig å delta i studien. Du kan når som helst og uten å oppgi noen grunn trekke ditt samtykke til å delta i studien. Dette vil ikke få konsekvenser for din videre behandling. Dersom du ønsker å delta,
Forståelse av innsikt og brukermedvirkning
undertegner du samtykkeerklæringen på siste side. Om du nå sier ja til å delta, kan du senere trekke tilbake ditt samtykke uten at det påvirker din øvrige behandling. Dersom du senere ønsker å trekke deg eller har spørsmål til studien, kan du kontakte Rita K. Klausen på telefon 776 60713 og e-post :
[email protected]. Ytterligere informasjon om studien finnes i kapittel A – utdypende forklaring av hva studien innebærer. Ytterligere informasjon om personvern og forsikring finnes i kapittel B – Personvern, økonomi og forsikring. Samtykkeerklæring følger etter kapittel B.
Innsikt og brukermedvirkning
Kapittel A- utdypende forklaring av hva studien innebærer Bakgrunn for studien Hensikten med denne studien er å undersøke brukernes forståelse av egen helse og behandling. Studien ønsker å bidra til å gi et språk som omhandler hva dette kan være for brukeren, og hvordan det kan henge sammen med måten brukeren beskriver seg selv på i sammenheng med behandlingsapparatet. Prosjektet vil arbeide med å ved å vektlegge kommunikasjon som griper fatt i brukerens kompetanse på seg selv og sin helse. Relevansen er å fokusere på hvordan innsikt kan fremmes for den enkelte bruker i hverdagen. I dag er det enighet om en brukerorientert praksis. Likevel erfarer brukere generelt å ha liten innflytelse, de ønsker å medvirke, men blir lite inkludert. Norske forskningsprosjekt viser at brukere som opplevde medvirkning mente dette styrket selvrespekt og mestringsstrategi. Forskning viser også at det generelt var en kritisk holdning til brukermedvirkning blant brukerne. Andre studier viser at pasienter opplevde at anerkjennelse og delaktighet i behandling i sykehusavdelinger var mangelfull og at informasjon om sykdom, fremtidsutsikter og rettigheter i psykisk helsetjeneste ikke er tilstrekkelig. Helsemyndighetene gir klare føringer for en forbedring av tjenestetilbudet til mennesker med psykiske lidelser. Et sentralt mål for forbedring er å styrke brukernes rettighet til å medvirke i utforming og utøvelse av tjenestetilbudet. Dette skal fremme en meningsfull rolle for brukerne hvor man selv kan fatte valg vedrørende egen situasjon. Brukermedvirkning styrker kvaliteten på behandlingstilbudet som blir tilpasset den enkelte brukers behov og mulighet. Forskning viser også at et vellykket behandlingsutfall forutsetter at tilbudet skreddersys til individuelle behov og at brukere involveres i planlegging av helsetilbud, samt at det tilbudet er tilgjengelig ved behov, fleksibelt og kulturelt relevant. Det forutsetter derfor at helsepersonell kommer i en konstruktiv relasjon til brukerne uavhengig av symptombildet. Det brukerne har å fortelle om seg selv, sin situasjon og sin helse, er viktig for å forstå behovene, erfaringene og livsmålene. Fortellinger er personlige beretninger som blir fortalt til andre. De har lenge spilt en viktig rolle innenfor flere deler av helsevesenet, og da særlig i psykisk helsearbeid. Fortellingen utgjør terapi, og en kilde til å forstå seg selv og andre.
Målsettingen med denne studien er å Øke kunnskapen om forhold som kan vanskeliggjøre brukermedvirkning innen psykisk helsearbeid innen kommune og spesialisthelsetjenesten og beskrive, analysere og forbedre rutiner, begrep og handlinger som påvirker brukermedvirkning. Vi har følgende spørsmålsstillinger: 1. Hvilke erfaringer har brukeren av å bli forstått/misforstått i forhold til egen livssituasjon? Hvilke sider ved egen livssituasjon mener brukeren det er viktig at andre forstår? 2. Hvilke erfaringer har brukere med samspill og medvirkning? Hvordan tolker man de situasjonene der man fikk/ ikke fikk medvirke? 3. Hva betyr det lokale stedet for måten brukeren opplever samhandling på? 4. Hva vil det si å ha eller mangle innsikt i egen livssituasjon eller sykdom? Kriterier for deltakelse For å delta i studien må du være mellom 18 og 65 år og motta behandling/ oppfølging fra et distriktspsykiatrisk senter i Troms eller Finnmark.
Innsikt og brukermedvirkning
Tidsskjema – hva skjer og når skjer det? Intervjuene vil finne sted i løpet av høsten 2011. De vil bli analysert og presentert i et antall ulike forskningsartikler i løpet av årene frem til 2015. Studiedeltakeren vil bli orientert så raskt som mulig dersom ny informasjon blir tilgjengelig som kan påvirke deltakerens villighet til å delta i studien. Mulige fordeler Fordelen med å delta er at dine erfaringer vil bli hørt og dokumentert som en del av et forskningsprosjekt. Dette kan bidra til økt kunnskap om brukerens rolle i helsevesenet.
Kapittel B - Personvern,økonomi og forsikring Personvern Opplysninger som registreres om deg er kun basert på de svarene du gir på spørsmålene under intervjuet. Vi kommer til å spørre deg om ditt syn på din egen helse og behandlinga du får, samt om brukermedvirkning. Vi vil også spørre deg om hva du tenker om stedet du mottar behandlingen på. Du setter selv grenser for hva du er villig til å fortelle. Dine grenser vil bli respektert av intervjuer. Universitetet i Tromsø ved administrerende direktør er databehandlingsansvarlig. Rett til innsyn og sletting av opplysninger om deg Hvis du sier ja til å delta i studien, har du rett til å få innsyn i hvilke opplysninger som er registrert om deg. Du har videre rett til å få korrigert eventuelle feil i de opplysningene vi har registrert. Dersom du trekker deg fra studien, kan du kreve å få slettet innsamlede opplysninger, med mindre opplysningene allerede er inngått i analyser eller brukt i vitenskapelige publikasjoner. Økonomi Studien utgjør et PhD- studium, og er en del av utdanningen til Rita K. Klausen. Det er et selvstendig prosjekt, og det foreligger ingen interessekonflikter. Studien er finansiert gjennom forskningsmidler fra Universitetet i Tromsø, institutt for helse- og omsorgsfag.
Informasjon om utfallet av studien Når prosjektet avsluttes, vil deltakerne, dersom de ønsker det, få tilsendt en kort oppsummering av funn og et antall eksemplarer av avhandlingen til det aktuelle distriktspsykiatriske senteret etter disputas.
Innsikt og brukermedvirkning
Samtykke til deltakelse i studien Jeg er villig til å delta i studien
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Jeg bekrefter å ha gitt informasjon om studien
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Appendix 4 Interview guide
Interview guide The interview is about your perception of your everyday life and the treatment you receive here at ................ (name of CMHC). I'd like to talk to you about what happened to you when you came here. I would also like to hear a bit about your thoughts on how this stay (or something with the experience gained here) will change your life going forward or whether it will change your life.
This project deals with what is referred to as user involvement, i.e., how you are able to influence what happens to you when you are in need of help from mental health services.
We want to hear about your experience as a mental health service user (MHSU) in the community mental health center (CMHC). In this way, we hope our contribution will allow the voices of the MHSUs to clearly be conveyed in research. Participation in the study is voluntary, and you may withdraw from the project at any time. You do not need to explain why. We want you to participate because you want to and you think that you have something to say about your own experience as an MHSU. Topics 1. Thoughts regarding own life situation
Proposed questions
1
The questions in parentheses are follow-up questions.
Can you tell me how you got here (the name of CMHC)? Or something about the decision that was made before you came here? Was it your desire or need? Others, who? How did you react to the fact that you were here? Happy, relieved, confused? What did your significant others think? (Have you experienced losing control over your own situation? Have you been hospitalized? What do you think about that?1) (What do you think about your diagnosis (if mentioned)? What does this diagnosis mean to you?) What do you think about the treatment you get here? Do you get the help you need? Do you think you can influence the help you get here? Do you feel you are getting too much or too little help? Do you feel that you are being listened to? Tell me about a situation where you felt that you were listened to. What do you think was the reason for being listened to?
2. User involvement
Can you tell me about a situation where you have not been listened to? What was the reason you were not listened to? Are there aspects of your life situation you think should be better taken into account while you are here?
Tell me about a situation where you had a say in an important decision about your treatment. Who was present during this decision? What do you think was essential if you were present for the decision? Tell me about a situation where you were not present for an important decision about your treatment. Who was present during this decision? What do you think was essential if you did not participate in the decision? What was needed to change the situation: What could have been done differently?
3. Meaning of contexts
4. Finishing the interview, comments
What do you think about the place you are now? (Is it better to stay here than other places you have lived?) Who do you contact in everyday life (other patients, friends, family, network)? Do you have family / relatives / networks nearby? Is this your hometown? Do you know many people who live here? Do you enjoy it here? Do you feel at home? Do you take part in activities in the community? Who is closest to you? Family, friends? What role do they play in your everyday life?
Is there anything I have not asked you that you think is important? Do you want to talk about it?
OVERSIKT OVER TIDLIGERE DOKTORGRADSAVHANDLINGER - PHD I HELSEVITENSKAP - VED AVDELING FOR SYKEPLEIE OG HELSEFAG/ INSTITUTT FOR KLINISK MEDISIN) VED UIT I PERIODEN 01.01.2007 TIL 01.08.2009 Sissel Lisa Storli – (2007) Living with experiences and memories from being in intensive care. A lifeworld perspective. Åshild Fause – (2007) Forpleiningen tilfredsstillende. Prisen ligesaa. Gunn Kristin Øberg – (2008) Fysioterapi til for tidlig fødte barn. Om sensitivitet, samhandling og bevegelse. Cathrine Arntzen – (2008) “Jeg får ikke hendene til å gjøre det de skal gjøre”. Å leve med apraksi etter hjerneslag. Aud-Mari Soini Fjelltun – (2009) Waiting for nursing home placement: A study of the life situation of frail elderly and their carer. Liv Wergeland Sørbye – (2009) Frail homebound elderly: basic nursing challenges of home care. A comprehensive study across 11 sites in Europe. Gudrun Nilsen – (2009) Smerter under Nordlyset. Den vanlige lidelsen. Det uvanlige livet.
OVERSIKT OVER TIDLIGERE DOKTORGRADSAVHANDLINGER - PHD I HELSEVITENSKAP - VED INSTITUTT FOR HELSE- OG OMSORGSFAG VED UIT I PERIODEN 01.08.2009 – 31.08.2013 Elin Damsgård – (2010) Activity related pain in patients with musculoskeletal disorders. An explorative study. Kirsti Torjuul – (2010) Living with ethical dilemmas. The ethical reasoning of surgeons and nurses in surgical units. Mari Wolff Skaalvik – (2010) Nursing homes as learning environments: A study of experiences and perceptions of nursing students and supervising nurses. Eivind Berthelsen – (2010) Farvel. En fortolkning av et pleiepersonales erfaringer med å pleie døende og å stelle døde.
Randi Inger Johanne Nymo – (2011) Helseomsorgssystemer i samiske markebygder i Nordre Nordland og Sør-Troms. Praksiser i hverdagslivet. En skal ikkje gje sæ over og en ska ta tida til hjelp. Kitt Irene Berg Austgard – (2012) Omsorgserfaring i tradisjon og moderne omsorgsfilosofi - en hermeneutisk studie av den sykepleiefaglige omsorgserfaringen i lys av Kari Martinsens og Ulrikke E. Nissens forfatterskap. Gabriele Elfriede Kitzmüller – (2012) Long-term experiences of living with stroke in a family context. Bente Ervik – (2012) Everyday life with prostate cancer: A qualitative study of men`s and spouses` experiences. Berit Andersdatter Bongo – (2012) Samer snakker ikke om helse og sykdom - Samisk forståelseshorisont og kommunikasjon om helse og sykdom. En kvalitativ undersøkelse i samisk kultur. Grete Mehus – (2012) Ungdom, risiko og snøscooterkjøring: En studie av ungdoms forhold til snøscooterkjøring, risikotaking, ulykker og uhell med foreslåtte forebyggingsstrategier. Rannveig Lind – (2013) Family members' experiences of decision-making processes in the context of withholding or withdrawing treatment in the ICU. A qualitative interview study. Britt Normann – (2013) Physiotherapy and professional clinical guidance in an out-patient clinic for people with multiple sclerosis. Body and movement in sense making and professional development. Bodil Blix – (2014) The construction of Sami identity, health, and old age in policy documents and life stories. A discourse analysis and a narrative study.
