O R I G I N A L A R T I C LE
doi: 10.1111/j.1752-9824.2010.01066.x
Adapt, discover and engage: a qualitative interview study with patients living with chronic pain ˚ sa Skjutar A
PhD Student
OT Reg is PhD Student, Department of Clinical Sciences Danderyd Hospital, Karolinska Institute, Stockholm and School of Health, Care and Welfare, Ma¨lardalen University, Eskilstuna, Sweden
Maria Mu¨llersdorf
PhD
OT Reg is Associate Professor, School of Health, Care and Welfare, Ma¨lardalen University, Eskilstuna, Sweden
Submitted for publication: 25 April 2010 Accepted for publication: 5 September 2010
Correspondence: A˚sa Skjutar OT Reg is PhD Student Department of Clinical Sciences Danderyd Hospital Karolinska Institute Stockholm Sweden Telephone: +46 16 153269 E-mail:
[email protected]
˚ & MU ¨ LLERSDORF M (2010) SKJUTAR A
Journal of Nursing and Healthcare of Chronic Illness 2, 254–261 Adapt, discover and engage: a qualitative interview study with patients living with chronic pain Aim. This paper reports a study that aimed to advance the understanding of needs related to chronic pain management by describing these needs as they are experienced by people living with chronic pain. Methods. Data during 2008 were collected by interviews with ten Swedish adults living with musculoskeletal chronic pain and analysed using thematic content analysis. Findings. Three themes were found: Need to handle the painful body and the eager mind, need for transformation of self-image, and need for affirmation through communion and enjoyment. The first theme describes how the body and mind are in conflict with each other and how participants constantly have to weigh the consequences of their actions. The second highlights the need to let go of a former self and to discover a new self. The third illustrates the participants’ needs for social engagement and for performance of valued occupations that provide hope and support. Conclusions. Findings show that participants experience internal needs, and they also have needs that can only be met through interaction with the surrounding context. Furthermore, findings show that some of the experienced needs can create inner conflict because they can be contradictory. Relevance to clinical practice. Findings from this study provide health care professionals with information about how patients with chronic pain experience needs. In turn, this can constitute a base that to enable evaluation of how closely the patients’ experiences of need correspond to the interventions that health care in general provides this group of patients. Patients should be supported to manage their possibly incompatible needs and to prioritise occupations that generate energy and satisfaction. Key words: needs assessment, pain management, qualitative research, rehabilitation
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Introduction The extent to which patients with chronic pain believe in their rehabilitation interventions plays a key role in the outcome of those interventions (Jensen et al. 2000). There must be a fit between the experienced needs and the interventions received. In addition, health care providers must acknowledge patients’ individual needs (Laver Fawcett 2007) and be attentive to these needs in order to work in a client-centred way. To expand knowledge in this field, this study aims to explore needs related to chronic pain management as they are experienced by people living with chronic pain. The focus is on occupation as an expression of need.
Background Chronic pain is a serious problem, with a prevalence of 12–30% in the adult European population (Breivik et al. 2006). Consequences can include decreased ability to perform daily occupations (Mu¨llersdorf & So¨derback 2000). Moreover, chronic pain can have a severe negative impact on employment status and lost work days (Breivik et al. 2006). Though multidisciplinary rehabilitation programmes as intervention for patients living with chronic pain are well established, it is also known that they do not work for everyone (Turk & Rudy 1991, Turk 2002, Persson et al. 2004). Reasons for this can include differences in how health care providers and patients value needs (Kersten et al. 2000); failure to customise treatment to meet individual needs (Turk 2005); and delayed rehabilitation interventions, which cause patients’ problems to become so manifest that they are less susceptible to change (Lydell et al. 2009). These issues indicate that patient needs associated with chronic pain management remain unmet to some extent. Access to rehabilitation is based on needs assessment (Jacobs & Jacobs 2004), which includes physiological, psychological, and behavioural aspects (Main et al. 2008). While it might sound self-evident, one could question which perspective should be used to view needs. A study by Jensen et al. (2000) showed that expert judgment (health care provider perspective) alone cannot be used as a reliable needs assessment, because it is a weak predictor of health status. Instead, the most important factor found to predict outcome was the patients’ own perceived ability to learn how to manage chronic pain. Consequently, patient perspective on needs plays a very important role in intervention design. Needs is a multifaceted concept that has been related to a number of other concepts in nursing and healthcare. These other concepts include health needs (Reid 2004), health care needs (Stevens & Gillam 1998, Mu¨llersdorf & So¨derback 2010 Blackwell Publishing Ltd
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2000), psychosocial needs (Bunston & Mings 1995), and rehabilitation needs (Kersten et al. 2000). Explicitly, need is a verb and can be understood as a physiological or psychological requirement for the well-being (Merriam-Webster 2010). The study reported in this paper focuses on patients’ needs related to chronic pain management. An occupational lens is used to view needs as they are expressed through daily occupations.
Background It is assumed that everyone has needs and that these arise within each individual (Reed & Sanderson 1999). Occupation is one human need (Townsend & Polatajko 2007), and needs can therefore be expressed through occupations. From this viewpoint, attention in this study is on what people do, how they experience doing, and the meaning of doing (Christiansen & Townsend 2009). However, occupation is more than doing; it is being and becoming (Wilcock 1999). Being is living but without the action of doing; and becoming points towards the future, the potential of change, and selffulfilment. People are capable of being responsible for satisfying their needs, although they are also influenced by their social environment (Reed & Sanderson 1999). Depending on a person’s individual needs and attached behaviours, there can thus either be accordance or conflict between a person’s and society’s value of needs. How nursing and occupational therapy view patients needs have much similarity. In nursing theory it is described that needs statements can be implied by a persons’ actions; what is done (Powers 2006); you eat food because you need to. The role of nurses or occupational therapists is then to meet or help patients themselves meet their needs (Fo¨rbundet Sveriges Arbetsterapeuter (FSA) (2005), Powers 2006). It has been emphasised that as a patients’ needs might contradict a nurses own, it is important to primarily focus on needs identification and secondly on need satisfaction (Powers 2006). There are diverse ways of conducting needs assessment and to be comprehensive it has been suggested to involve mixed methods and involvement of both receivers and providers of health care (Witkin & Altschuld 1995, Mu¨llersdorf & So¨derback 1998, Finlayson 2006). A number of studies using a qualitative approach have delved into the experience of living with musculoskeletal chronic pain and chronic illness (Paulson et al. 2002, Bullington et al. 2003, Thorne et al. 2003, Kralik et al. 2004, Satink et al. 2004), and some studies have also touched upon patients’ needs. The importance of enjoyable involvement was addressed by Fisher et al. (2007), who explored the lived experience of people with chronic pain. Participants explained that they needed enjoyment through occupation 255
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because this could decrease their pain and/or help them to forget their pain for a while. Having a passion for something that could absorb both mind and spirit was believed to be an asset in pain management. In the same study, participants expressed the important role of close family members, who were often the only people the participants could count on for physical and emotional support. Lo¨fgren et al. (2006) addressed strategies for control of pain in working women living with fibromyalgia. To remain at work the women experienced that they had to take care of themselves, pay attention to their bodily sensations and use their pain as a guide to doing and resting whilst also enjoying small things in life despite a constant struggle.
Aim The aim of this study is to describe needs related to chronic pain management as they are experienced by people living with chronic pain.
Rationale Chronic pain is a condition that can affect all aspects of a person’s life. If chronic pain restricts daily occupations, rehabilitation might need to restore occupational performance. Former research has shown that patients’ beliefs play an important role in intervention outcome, thus necessitating studies of needs from their perspective. Despite this, the experienced needs related to chronic pain management of patients living with chronic pain remain partly unexplored. Not knowing how patients experience needs related to pain management can lead to non-patient-centred practice, ineffective rehabilitation programmes and unsuccessful use of tax revenue.
of 2008 when the rehabilitation programme was ending. Potential participants (n = 11) were approached by a contact in the rehabilitation team who asked if the first author could contact them. Those interested in participating (n = 10) were provided written and oral information about the study. For those willing to participate (n = 10), interview times and locations were scheduled. The participants’ ages ranged from 22–50 (median = 38). All ten participants had experienced musculoskeletal chronic pain for a number of years (4–32), and nine did not work due to their pain. Seven participants were women. Two of the participants were not native Swedish speakers but spoke fluent Swedish. They were offered a professional translator as support during the interviews; both preferred to have their daughters as support for verbal communication instead, which occurred.
Data collection To prepare for data collection, a test interview was conducted. Based on this, the interview guide was revised by removing questions to make it more focused towards the study aim. The final interview guide had one main question. Each of the 10 participants was interviewed once by the first author. Participants could choose the interview location, which led to nine interviews being conducted at the rehabilitation unit and one in an informant’s home. Each interview started with ‘Please tell me about your daily life, what you do, and how you experience it’. As the interview progressed, follow-up questions were asked, such as ‘Could you please tell me more about that?’ and ‘What do you think about that?’ The questions were deliberately not about needs directly, because this concept can be somewhat difficult for participants to grasp and can often generate such responses as ‘get rid of the pain’. All interviews were recorded and lasted between 30–60 minutes.
Methods This study had a research design of a qualitative interview study and used thematic content analysis (Baxter 1991) as a method. This method is interpretative and involves abstraction of manifest descriptions into latent themes. The research strives to seek understanding from the informant perspective. Each individual experience is valuable and no attempts to generalise are made.
Participants The study was conducted at a rehabilitation unit in Sweden. Participants were part of an outpatient rehabilitation programme. This study took place during the early summer 256
Data analysis Recordings of the interviews were transcribed verbatim by the first author. The interview text was then analysed using thematic content analysis as described by Baxter (1991). Each interview was first read through several times to get a sense of it as a whole. An effort was also made to read the text at different levels. A literal reading analysed the language used and the structure of the text. Following this was an interpretative reading to find what was expressed beyond the verbatim text. The text was then divided into meaning units. These concerned occupational experiences in which needs related to pain management were communicated and could be a word, a sentence, part of a paragraph, or a whole 2010 Blackwell Publishing Ltd
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paragraph. Highlighted meaning units were then condensed and coded, though keeping the manifest content. Baxter (1991) describes themes as ‘threads of meaning that recur’ (pg 250); at the next stage of the analytical process, these were abstracted from the manifest codes. To confirm the themes, each step of analysis was verified by going back and forth between the meaning units, codes, and themes. Finally, the whole text was reread to corroborate all themes. Texts were originally in Swedish and kept so during analysis. After verification of the themes, they were translated into English. An example of the analysis began with a meaning unit that read ‘when my back is like it is, doesn’t work, it’s like you can’t do anything’. This was condensed into ‘when the back is like it is, can’t do anything’ and coded into ‘body controls’. This was then abstracted and finally included in the theme ‘Need to handle the painful body and the eager mind’.
Ethical considerations Participants signed informed consent to participate in the study. The regional ethics committee provided approval for the study to be conducted.
Trustworthiness Several techniques were used to establish trustworthiness: triangulation, peer debriefing, thick descriptions, audit trail and reflexive journal (Lincoln & Guba 1985). To reduce the risk of findings based on biassed interpretations, triangulation of investigators (Polit & Beck 2004) was exercised during data analysis. Certain data were analysed separately and then compared and discussed among the authors. Discussions continued until complete agreement was reached. Peer debriefing was used to increase credibility (Lincoln & Guba 1985). Findings were presented at research seminars to be critiqued by colleagues who represented different professions and epistemological backgrounds. Attempts were made to provide thick descriptions of the methods to facilitate transferability; that is, the extent to which findings can be applied to other people. The authors background is in occupational therapy and it should be considered how this is reflected throughout the paper and how it might have influenced bias. All documents, including raw data and notes from each step of analysis, were systematically collected and kept to provide an audit trail. Also, reflexivity as a strategy was used to interpret how the self as an instrument might have influenced the research process and to document the train of thought during each step of analysis. This involved keeping 2010 Blackwell Publishing Ltd
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field notes, analytic memos and a personal reflective journal (Carpenter & Suto 2008).
Findings Three themes regarding needs related to chronic pain management were found: need to handle the painful body and the eager mind; need to transform self-image, and need for affirmation through communion and enjoyment. Some needs concerned physical and mental well-being, while others concerned external aspects in the surrounding context. There were also findings of incompatible needs, such as desire to rest but also to do. The themes are further presented in the text below along with illustrative extractions from the data.
Need to handle the painful body and the eager mind This theme describes how participants experienced the need to restrain themselves and be attentive to physical needs to keep the pain in check while also being eager to do and to perform. Body and mind were somewhat in conflict with each other, and participants were constantly weighing the consequences of their actions. Nuances were illuminated through occupations and contexts of daily life. For example, some had the need to maintain a certain standard (e.g. household duties) independently or to sustain fixed routines. Others had no problem accepting help during performance or to discontinue occupations to avoid pain flare-ups. Participants expressed how they tend to their physical bodies and how they embrace their need to rest, to pace themselves, and to avoid stress. They repeatedly tune into the way their bodies respond during the day. The way they experience their bodies at a certain time then constitutes a base from which they make decisions about actions and occupational engagement. Participants avoided making definite plans. By avoiding commitments, they could also avoid the risk of cancelling a social engagement (due to pain) and the ensuing guilt. Yet, ambivalence was common. Many felt pressure to live up to society’s values and to perform in order to be respected. Also, their desire to give full expression to their (often overenthusiastic) intellect could override their physical needs. One informant described setting her pain aside, gritting her teeth, and letting her mind take the lead as she got up and got her children ready for daycare and school. See, had I listened, had I listened to what hurts, then I wouldn’t have done it. You don’t think, you just do, you just grit your teeth and eh, do what has to be done.
Another informant described finding a fishing trip worthwhile. It satisfied his lust for adventure, though he was aware 257
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of the increased pain that might follow. Participants had gone through rehabilitation programmes that recommended a steady and moderate level of activity, but the participants had not yet found a good solution for managing their pain. They vacillated between the two extremes of letting the body lead and letting the mind lead, and they repeated this cycle. Their need was not to insist to either their body or their mind, but to both.
Need to transform self-image It was clear to the participants that they needed to change internally. As a consequence of the pain, they could no longer live life as they used to. They had initially sought out external changes, but they realised now that they might have to change their behaviour, daily routines and level of independence. The theme ‘need to transform self-image’ was about a time-consuming process of letting go and embrace discovering a new self. Several participants realised that they had prioritised others and neglected themselves. This new perspective led to a reevaluation of time, energy and involvement. An informant describes changing her weekend routine because of her changed view of self-worth. Instead of starting her weekend with housework, now she starts her weekend by doing something for herself while she has the energy. Another dimension of the need to transform is changing the way one views accomplishments. Some participants had such high standards that they were previously never satisfied with their lives. To avoid breaking their spirits, the participants have changed their standards. A new perspective gives performance meaning. Yes, now I’m much more content, I really am. Like I said, this summer I repainted a wall, one side of the house. And when I get up there and see it, I am very pleased that it looks so nice even though I know that the other ones aren’t done. Before, I wouldn’t have looked at that wall; I would’ve looked at the other ones.
The transformation has to be experienced bit by bit; it cannot be accomplished in an instant or by persuasion. Yet, it is through interaction with the context (viewing the house) that the informant becomes aware of a transformation. At times, glimpses of new emergent natures were seen. Participants described needs to communicate differently, to become observers of the self, and to let go of impulses to control others. It seems that a transformation came to a head within and then suddenly was articulated: It’s so strange for me to say no. I’m not used to it. Nobody else is used to it either, my doing that. But, yes, it feels strange. So I felt a little bad 258
about it. That’s why I wanted to go back several times. But then I said (to myself), ‘dammit … stop it!’ And that felt good. But it was tough.
Need for affirmation through communion and enjoyment Participants experienced that they needed to direct their energy towards enjoyment. They initially focused their energy on work-related roles and searching for a fast cure for their pain. This led to experiences of defeat and sometimes to increased pain. To be encouraged and to keep going despite pain, participants need hope and support, which they found through social interaction and valued occupations. Meeting or talking with family, partners, or friends was mostly experienced as pleasant and is needed to replenish energy and bring meaning to participants’ daily life. Social relationships offer being without so much doing. Moreover, they often present opportunities for dialogue in which personal experiences can be validated and contexts where new behaviours can be tried out. But, I’m seeing friends and family again, which means a lot to me. There it’s also important to prioritise, prioritise right, whom, whom should I see? Who is good for me? Who gives me energy?
The need for affirmation through enjoyment was expressed as the desire to do something for oneself. What this stood for was highly individualised. It could be learning a new occupation or rediscovering earlier interests. Participants also described a clear connection between occupation and health, and they stressed the importance of leaving home to get a change of physical environment. I went to a friend’s and played a video game and talked and just had a good time, just relaxed. It was so nice to get out and do something.
Occupations experienced as purposeful also hold promise of hope and becoming. The participants describe how doing something joyful is a catalyst to recover even more energy, interest and creativity. This feeling of emotional recharge leads to feelings of optimism and facilitates the ability to envision future positive changes. Context can either be supportive or obstructive in affecting the way that the participants feel about managing their chronic pain. This theme highlights the fact that a person’s contextual environment influences chronic pain management as well as a person’s inner landscape.
Discussion This study has shown that participants described both physical and mental needs and that these needs are somewhat incompatible. Chronic pain has been described as complex, 2010 Blackwell Publishing Ltd
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and these findings might offer an explanation about the difficulty of understanding the related needs. They are just as complex; and in the end, this sheds light on how interventions should be designed to meet these needs. The findings reveal that patients with chronic pain find themselves in a predicament of needing to handle their painful body while simultaneously satisfying their eager mind. These findings add to the established body of research in the area of chronic pain, by showing how needs are interrelated. A study (Keponen & Kielhofner 2006) that examined underlying metaphors in narratives found that women living with chronic pain experience occupational performance in distinct patterns. Keponen and Kielhofner (2006) further argue that the metaphors ‘moving forward’, ‘slowing down’, ‘fighting’, and ‘standing still’ each represent a different way of living with chronic pain. Our study, however, illustrates that the participants have the need to do all of the above – not at the same time, but each one by turns. In one instance the informant might be moving forward, usually when the pain is under control. At other times, daily occupations are part of a fight wherein the eager mind wants to conquer the painful body. However, Audulv et al. (2009) found that the process of self management among people with chronic illness can be understood as an inner negotiation. This gives support to our findings, though Audulv et al. had participants with different forms of chronic illnesses. The findings that this study’s participants experience a ‘Need to handle the painful body and the eager mind’ not only resonate with previous empirical research but also with such theories as the Shifting Perspectives Model of Chronic Illness (Paterson 2001). This model suggests that people with chronic illnesses shift between the perspective of illness and the perspective of wellness in order to manage everyday life and to make sense of their experiences (Paterson 2001, 2003). In this study, participants illustrated this interchangeable use of perspectives by describing times when they let their bodies lead and other times when they let their minds lead. Participants’ activity increased when they let their minds lead, and this can be associated with having a wellness perspective in the foreground. When they let their bodies lead, however, participants focused on symptom control which can be related to having an illness perspective in the foreground. A need to transform self-image meant letting go of the past and developing a new self. This can be related to what Wilcock (1999) presents as becoming. It holds a hope of being in the future; what one has the potential to be and how one can find self-fulfilment. It seems that the participants, through a raised level of consciousness, have begun a process of change during their rehabilitation. Becoming is not exclusive to patients undergoing rehabilitation. The needs 2010 Blackwell Publishing Ltd
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identified in this study might also be the needs of people without pain. These needs nonetheless represent the findings, so they can be understood as particularly important for the participants at this point in time. Moreover, becoming holds the notion of continuation. The needs related to chronic pain management are not likely to stop as long as the pain is present, although they might change. Doble and Santha (2008) assert in their proposed framework for occupational well-being that individual needs can be met through engagement in occupations that are experienced as satisfying and meaningful. With regard to enjoyment, findings from this study are consistent with Doble and Santhas proposition as well as the study by Fisher et al. (2007). Participants in our study experienced needs of affirmation through socialising and enjoyment. It seems also as if the occupations experienced as satisfying have the power to restore participants’ energy levels while they are in the middle of doing them. This is an important discovery for the participants that occupation might not lead to more pain but rather to more energy. This could lead to questioning certain aspects of current rehabilitation interventions. Is it sensible to start patients on training programmes when they already feel exhausted? What would the outcome be if patients instead first tried to raise their energy level by doing valued occupations and then started physical training? Questions might seem axiomatic, but none the less they are appropriate because many rehabilitation interventions are not designed this way. We argue that lack of energy is a barrier to occupation. Patients living with chronic pain should be supported on an individual basis to explore occupations that recharge them. Considered together, the themes of this study are interrelated. The same need can be satisfied through different occupations, and one occupation might meet several needs (Townsend & Polatajko 2007). The need to handle the eager mind can be connected to the need of doing something enjoyable. Also, the need for transformation could be related to the participants’ inner changes as they try to handle the painful body as well as the eager mind. The ‘need for affirmation through communion and enjoyment’ might be highlighted by participants because it could be a way to put up with the inner conflict described in ‘need to handle the painful body and the eager mind’.
Strengths and limitations Both authors are occupational therapists and have experience working with patients with chronic pain, and this might have affected both data collection and analysis. Viewed as an asset, it might have helped understand the context in which the 259
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participants found themselves. Drawbacks might include neglect to probe central statements during the interviews and simplification of statements when abstracting text into themes. Convenience sampling was used with the benefit of getting data from an existing group that had received similar rehabilitation interventions. However, to expand knowledge about how needs are experienced in different contexts, studies of participants with different rehabilitation backgrounds could be useful. The presence of two participants’ daughters during the interviews might be a weakness. However, as it is crucial not to exercise power over the participants regarding terms for participating, their wishes were fully respected. Still, this could have had a negative impact on the interviews, because participants might have felt restricted communicating their experiences in the presence of a close relative. In this study, the interview texts were not principally expected to include manifest descriptions of needs related to chronic pain management. Thus, a thematic content analysis (Baxter 1991) was chosen for analysis. Direct questions about needs followed by manifest content analysis might have generated different findings. However, based on questions regarding daily life and latent interpretations of these thematic content analysis seemed the most appropriate to accomplish the study aim. Then again, it can be questioned how patients’ needs can be described without having asked patients’ about needs explicitly. According to Bradshaw (1994) needs can be experienced but not expressed openly and it is these needs that were sought-after through the interviews about daily life. Considering the study limitations, the findings have to be interpreted with caution.
Conclusions Adapting to a life involving chronic pain can be a difficult process. Recognising the needs of patients living with chronic pain could improve the interventions to meet these needs. This recognition could also improve the support for patients to find ways to meet their needs themselves. Findings suggest that patients should not expect to adopt an all-embracing, finished strategy to manage chronic pain during rehabilitation. Instead, it might be more realistic to hold on to the prospect that an inner conflict might remain but in a different form. As participants in this study also described ‘need for transformation of self-image’, patients have to recognise that much of their work to manage chronic pain continues after rehabilitation. Furthermore, findings highlight the need for interventions that concern social relationships and enjoyment; patients benefit from encouragement to find their own sources of motivation, energy and creativity. 260
Table 1 Schematic overview of the needs found throughout analysis. Adapt, discover and engage can be linked to each theme and illustrate hands-on what participants need Need to… Adapt
Discover
Engage
Handle the painful body Handle the eager mind To rest
New behaviours
In social interactions In valued occupations In oneself
To pace Avoid stress
New daily routines New level of independence A new self New perspectives
To facilitate transferability and application of findings in clinical practice, the concrete needs found in the three themes can be described schematically. Processes of adapting, discovering and engaging are present and illustrate needs along the route participants travelled towards finding pain management. See Table 1.
Acknowledgements We would like to thank the patients for participating in this study.
Contributions ˚ S, Study design: A˚S, MM; data collection: A˚S; data analysis: A MM and manuscript preparation: A˚S, MM.
Funding The study was funded by Ma¨lardalen University and The Health Care Sciences Postgraduate School in Sweden.
Conflict of interest The researchers have no conflicting interests.
References Audulv A˚, Norbergh K-G, Asplund K & Ho¨rnsten A˚ (2009) An ongoing process of inner negotiation -a grounded Theory study of self-management among people living with chronic illness. Journal of nursing and healthcare in chronic illness 1, 283–293. Baxter LA (1991) Content analysis. In BM Montgomery & S Duck (Eds), Studying Interpersonal Interaction. The Guilford Press, London, pp. 239–254. Bradshaw J (1994) The conceptualization and measurement of need: a social policy perspective. In Researching the People’s 2010 Blackwell Publishing Ltd
Original article Health (Popay J & Williams G eds). Routledge, London, pp. 45– 48. Breivik H, Collett B, Ventafridda V, Cohen R & Gallacher D (2006) Survey of chronic pain in Europe: prevalence, impact on daily life, and treatment. European Journal of Pain 10, 287–333. Bullington J, Nordemar R, Nordemar K & Sjostrom-Flanagan C (2003) Meaning out of chaos: a way to understand chronic pain. Scandinavian Journal of Caring Sciences 17, 325–331. Bunston T & Mings D (1995) Identifying the psychosocial needs of individuals with cancer. The Canadian Journal of Nursing Research 27, 59–79. Carpenter C & Suto M (2008) Qualitative Research for Occupational and Physical Therapists. A practical Guide. Blackwell Publishing, Oxford. Christiansen CH & Townsend EA (2009) An introduction to occupation. In Introduction to Occupation, the Art and Science of Living, 2nd edn (Christiansen CH & Townsend EA eds). Pearson Education Inc., Upper Saddle River, NJ, pp. 1–34. Doble SE & Santha JC (2008) Occupational well-being: rethinking occupational therapy outcomes. Canadian Journal of Occupational Therapy 75, 184–190. Finlayson M (2006) Assessing need for services. In Research in Occupational Therapy: Methods of Inquiry for Enhancing Practice (Kielhofner G ed.). FA Davies, Philadelphia, pp. 591–606. Fisher GS, Emerson L, Firpo C, Ptak J, Wonn J & Bartolacci G (2007) Chronic pain and occupation: an exploration of the lived experience. American Journal of Occupational Therapy 61, 290–302. Fo¨rbundet Sveriges Arbetsterapeuter (FSA) (2005) Etisk kod fo¨r arbetsterapeuter [Ethical Guidelines for Occupational Therapsits]. FSA, Stockholm. Jacobs K & Jacobs L (eds) (2004) Quick Reference Dictionary for Occupational Therapy, 4th edn. Slack Incorporated, Thorofare. Jensen IB, Bodin L, Ljungqvist T, Bergstro¨m KG & Nygren A (2000) Assessing the needs of patients in pain: a matter of opinion? Spine (Phila Pa 1976) 25, 2816–2823. Keponen R & Kielhofner G (2006) Occupation and meaning in the lives of women with chronic pain. Scandinavian Journal of Occupational Therapy 13, 211–220. Kersten P, George S, McLellan L, Smith JA & Mullee MA (2000) Disabled people and professionals differ in their perceptions of rehabilitation needs. Journal of Public Health Medicine 22, 393–399. Kralik D, Koch T, Price K & Howard N (2004) Chronic illness selfmanagement: taking action to create order. Journal of Clinical Nursing 13, 259–267. Laver Fawcett A (2007) Principles of Assessment and Outcome Measurement for Occupational Therapists and Physiotherapists. John Wiley & Sons, West Sussex. Lincoln YS & Guba EG (1985) Naturalistic Inquiry. Sage Publications, Newbury Park, CA. ¨ hman A (2006) ‘A constant struggle’: Lo¨fgren M, Ekholm J & O successful strategies of women in work despite fibromyalgia. Disability and Rehabilitation 28, 447–455. Lydell M, Grahn B, Ma˚nsson J, Baigi A & Marklund B (2009) Predictive factors of sustained return to work for persons with musculoskeletal disorders who participated in rehabilitation. Work 33, 317–328. Main CJ, Sullivan MJL & Watson PJ (2008) Pain Management. Churchill Livingstone, Philadelphia.
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Experiences of need Merriam-Webster (2010) Need. Available at: http://www.merriamwebster.com/dictionary/need (accessed 18 February 2010). Mu¨llersdorf M & So¨derback I (1998) Needs assessment methods in healthcare and rehabilitation. Critical Reviews in Physical and Rehabilitation Medicine 10, 57–73. Mu¨llersdorf M & So¨derback I (2000) Assessing health care needs: the actual state of self-perceived activity limitation and participation restrictions due to pain in a nationwide Swedish population. International Journal of Rehabilitation Research 23, 201–207. Paterson BL (2001) The shifting perspectives model of chronic illness. Journal of Nursing Scholarship 33, 21–26. Paterson BL (2003) The koala has claws: applications of the shifting perspectives model in research of chronic illness. Qualitative Health Research 13, 987–994. Paulson M, Danielson E & So¨derberg S (2002) Struggling for a tolerable existence: the meaning of men’s lived experiences of living with pain of fibromyalgia type. Qualitative Health Research 12, 238–249. Persson E, Rivano-Fischer M & Eklund M (2004) Evaluation of changes in occupational performance among patients in a pain management program. Journal of Rehabilitation Medicine 36, 85– 91. Polit DF & Beck CT (2004) Nursing Research Principles and Methods, 7th edn. Lippincott Williams & Wilkins, Philadelphia. Powers P (2006) The concept of need in nursing theory. In Nursing Theories Conceptual & Philosophical Foundations, 2nd edn (Hesook SK & Kollack I eds). Springer publishing company, New York, pp. 71–88. Reed KL & Sanderson SN (1999) Concepts of Occupational Therapy, 4th edn. Lippincott Williams & Wilkins, Baltimore. Reid M (2004) An assessment of health needs of chronic low back pain patients from general practice. Journal of Health Psychology 9, 451–462. Satink T, Winding K & Jonsson H (2004) Daily occupations with or without pain: dilemmas in occupational performance. OTJR: Occupation, Participation and Health 24, 144–150. Stevens A & Gillam S (1998) Needs assessment: from theory to practice. British Medical Journal 316, 1448–1452. Thorne S, Paterson B & Russel C (2003) The structure of everyday self-care decision making in chronic illness. Qualitative Health Research 13, 1337–1352. Townsend EA & Polatajko HJ (2007) Enabling Occupation II: Advancing an Occupational Therapy Vision for Health, Well-Being & Justice Through Occupation. CAOT Publications ACE, Ottawa. Turk DC (2002) Clinical effectiveness and cost-effectiveness of treatments for patients with chronic pain. The Clinical Journal of Pain 18, 355–365. Turk DC (2005) The potential of treatment matching for subgroups of patients with chronic pain: lumping versus splitting. The Clinical Journal of Pain 21, 44–55. discussion 69-72. Turk DC & Rudy TE (1991) Neglected topics in the treatment of chronic pain patients–relapse, noncompliance, and adherence enhancement. Pain 44, 5–28. Wilcock A (1999) Reflections on doing, being and becoming. Australian Occupational Therapy Journal 46, 1–11. Witkin B & Altschuld J (1995) Planning and Conducting Needs Assessments – A Practical Guide. Sage Publications, Thousand Oaks.
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