Service users' views regarding user involvement in

Download PDF
0 downloads 0 Views 152KB Size Report
Comment
Results: User involvement means that people using mental health services are respected, listened to and can act in co-operation ... Service users' interest is more in their own care and treatment than in the mental ... Peck, Gulliver, and Towel.
Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

Contents lists available at ScienceDirect

Archives of Psychiatric Nursing journal homepage: www.elsevier.com/locate/apnu

Service users' views regarding user involvement in mental health services: A qualitative study ⁎

Minna Laitilaa, , Jalmiina Nummelinb, Tiina Kortteistoc, Anneli Pitkänend a

Hospital District of South Ostrobothnia, Hanneksenrinne 7, 60220 Seinäjoki, Finland Hospital District of Kanta-Hame, Ahvenistontie 20, 13530 Hämeenlinna, Finland c Tampere University Hospital, Department of Internal Medicine, Teiskontie 35, 33521 Tampere, Finland d Administration Centre, Pirkanmaa Hospital District, Teiskontie 35, 33521 Tampere, Finland b

A R T I C LE I N FO

A B S T R A C T

Keywords: User involvement Mental health services Focus group Qualitative content analysis

Background: Service user involvement is emphasised in many strategies, plans and declarations globally. However, in practice, service user involvement is not always achieved and remains at a tokenistic level. Objectives: To explore the views of service users on user involvement in mental health service. Design: Explorative descriptive study design. Setting: The study was conducted in one psychiatric hospital and in two mental health organisations in western Finland. Methods: The data was generated through three focus group interviews and analysed with qualitative content analysis. Results: User involvement means that people using mental health services are respected, listened to and can act in co-operation with professionals so than they feel that they can influence their own care and treatment. The participants articulated concrete factors that promote or inhibit user involvement. Service user involvement can be enhanced by strengthening service users´ position, by developing the mental health care system and by specific training for professionals. Conclusions: The views of service users in this study concerning the realisation of user involvement and the factors promoting and preventing it were realistic. They are basic elements of patient-centred care and of all human interaction. Our participants described service user involvement in their own care and treatment. They emphasised the need to have more information, and wanted to be more involved in decision-making about their own care and treatment. They called for better care planning and co-ordination as one way to increase service user involvement. These also have implications for mental health services at the system level.

What is already known about the topic?

• Service user involvement has been identified globally and nationally as an important subject. • User involvement can occur on many levels. • In practice, service user involvement is not always achieved and remains at a tokenistic level. • In mental health services user involvement requires special attention.

What this paper adds?

• ⁎

• Service users' interest is more in their own care and treatment than in the mental health care system in general. • Service users are especially interested in exerting influence in their medication issues. • Service users see involvement as basic matters like being treated with respect. • Service users call for better care planning and co-ordination as one way to increase service user involvement. • Professional judgement and sensitivity are needed for service users to become involved and participate in every stage of their treatment. • On mental health care system level, creation of care pathways and

There are still challenges in the realisation of service user involvement in mental health care.

training of different groups of professionals may be ways to increase service user involvement.

Corresponding author. E-mail addresses: minna.laitila@epshp.fi (M. Laitila), jalmiina.nummelin@khshp.fi (J. Nummelin), tiina.kortteisto@pshp.fi (T. Kortteisto), [email protected].fi (A. Pitkänen).

https://doi.org/10.1016/j.apnu.2018.03.009 Received 2 October 2017; Received in revised form 27 January 2018; Accepted 11 March 2018 0883-9417/ © 2018 Elsevier Inc. All rights reserved.

Please cite this article as: Laitila, M., Archives of Psychiatric Nursing (2018), https://doi.org/10.1016/j.apnu.2018.03.009

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

Introduction

Earlier research has shown that service users and providers both value service user involvement but have different views and perspectives on its content (Elstad & Eide, 2009; Omeni et al., 2014; Petersen et al., 2012; Rise et al., 2013). From the service users' point of view, user involvement on an individual level means being able to define one's own needs, to make one's own decisions and to exert influence over daily activities and everyday life, but also to receive support when needed without being subjected to control or coercion (Elstad & Eide, 2009; Petersen et al., 2012). Participation in care planning (Grundy et al., 2016) and shared decision-making (Dahlqvist, Schön, Rosenberg, Sandlund, & Svedberg, 2015) are key components of user involvement. There seems to be a general consensus on the importance of service user involvement but there is a lack of research reflecting the views and opinions of service users themselves (Gee et al., 2016; Goodwin & Happell, 2006; Omeni et al., 2014; Richter, Halliday, Grømer, & Dybdahl, 2009). To reduce this knowledge gap, we explored the views of service users on user involvement in mental health services in Finland. The study is part of a multi-centre research project intended to develop service users' and carers' opportunities to be more involved in treatment. The aim of the study was to examine service users' views on user involvement in mental health services. We were interested in service users' views on user involvement at all levels of mental health services. We utilised an explorative descriptive study design (Polit & Beck, 2004). The research questions were: From the viewpoint of service users

Service user involvement is emphasised in many strategies, plans and declarations (Storm & Davidson, 2010). In Finland, the national plan for mental health and substance abuse work (Ministry of Social Affairs and Health, 2010, 2014) introduced in 2009 outlined common national objectives for mental health and substance abuse work. The plan emphasised that the client's status must be reinforced; user experts and peers should be included in the planning, implementation and evaluation of mental health and substance abuse work. In many countries, recovery orientation has become the guiding principal in improving mental health services. According to recovery orientation, a person can live a full and meaningful life despite mental ill health and the symptoms caused by it (Shepherd, Boardman, & Slade, 2008). Involving service users is one of the key aspects in recovery focused services (Bower et al., 2015; Slade, Adams, & O'Hagan, 2012). Service user involvement is often described as a continuum or as a linear model, depending on how much power the service user has (Clark, Davis, Fisher, Glynn, & Jefferies, 2008; Elstad & Eide, 2009). Involvement can occur on many levels. Peck, Gulliver, and Towel (2002) proposed four levels of participation (i) interaction between service users, (ii) interactions between users and health care professionals, (iii) local service management opportunities and (iv) service planning. Tambuyzer, Pieters, and Van Audenhove (2014) stated that involvement occurs on individual (micro-level), health-care service level (meso-level), policy level (macro-level) and on a level including involvement in research and education (meta-level). According to Storm, Hausken, and Mikkelsen (2010), involvement is realised on the one hand when service users participate in their own care and treatment, and on the other hand when they participate in decisions concerning mental health services. Despite the growing interest in service user involvement, in practice, it is not always achieved (Borg, Karlsson, & Kim, 2009; Laitila, Nikkonen, & Pietilä, 2011), and involvement sometimes remains at a tokenistic level (McCann, Clark, Baird, & Lu, 2008; Omeni, Barnes, MacDonald, Crawford, & Rose, 2014). Service user involvement is a complex concept and difficult to define, and the concepts involvement and participation are often used synonymously (Tambuyzer et al., 2014; Thompson, 2007). Differing definitions may confuse professionals and impede the implementation of user involvement (Storm et al., 2010), and translating involvement into practice is considered difficult (Petersen, Hounsgaard, Borg, & Nielsen, 2012). Millar, Chambers, and Giles (2015) found five key attributes of service user involvement in mental health care: person-centred approach, informed decisionmaking, advocacy, obtaining service user views and feedback and working in partnership. Based on these attributes they defined service user involvement in the context of mental health care as:

-

How is service user involvement realised in mental health care? What are the factors that promote service user involvement? What are the factors that inhibit service user involvement? How should service user involvement be improved in mental health care?

Method Design and data gathering A qualitative approach was used with focus group interviews as the method of data collection. These focus interviews were used to enable participants to discuss and enrich their views on the matter. Discussions in groups may have led to findings not emerging in one-to-one discussions (Grundy et al., 2016). The methodological orientation was content analysis, which enables the drawing of replicable and valid inferences from data in their context. The aim is to provide a broad description of the phenomenon by creating concepts or categories describing the phenomenon. (Elo & Kyngäs, 2008; Graneheim & Lundman, 2004). Participants were recruited from one psychiatric hospital and from two mental health organisations in western Finland. The ward is a closed acute ward with 17 beds in a university hospital. The first organisation is a service user organisation founded by experts-by-experience and peer support workers offering peer support and peer-led activities to everyone interested in issues concerning mental health and a substance-free lifestyle. The other organisation is professionally led and offers e.g. rehabilitation services, group and educational activities, voluntary work and recreational activities to people recovering from mental health or substance abuse problems, and people interested in mental health related issues. We wanted to include views from different types of service users in different stages of recovery. The participants were selected by purposive sampling. Inclusion criteria were that they were adults (over 18 years old), had experience of using mental health services and were able to provide informed consent. In each organisation there was a named contact person to inform possible participants about the study. In the hospital, staff members evaluated willing participants' ability to participate and gave them verbal and written information. This was done to confirm participants' ability to give their

“An active partnership between service users and mental health professionals in decision making regarding the planning, implementation, and evaluation of mental health policy, services, education, training and research. This partnership employs a person-centred approach, with bidirectional information flow, power sharing and access to advocacy at a personal, service and/or societal level.”(p. 216.) In mental health services, user involvement requires special attention because mental health problems may affect users' abilities and motivation to be involved and participate (Tambuyzer et al., 2014). Translating involvement into practice entails that professionals working within those services concentrate on the resources, abilities and possibilities of service users, and on the further development of services (Roberts, 2010). Attitudes of managers and staff are decisive in user involvement (Crawford et al., 2003; Roper & Happell, 2007). Gee, McGarty, and Banfield (2016) identified systemic barriers to user and carer participation. These included professionals' lack of awareness, limited opportunities for participation, slow progress for change, policy issues and mental health culture, including stigma. 2

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

study were identified and organised according to the research questions. The unit of analysis was one sentence or a meaningful combination of more than one sentence. In the next phase original expressions were inductively analysed separately with reference to the research questions. The original expressions were reduced and the reductions were grouped into subcategories. The subcategories with similar content were then grouped into main categories. Each category was named using content-characteristic words. These phases of the analysis process were made separately by two researchers (ML and JN). After the preliminary analysis process was completed the two researchers conferred about the analysis and the categories emerging. The other authors (AP and TK) commented the analysis. In this way the final analysis was completed. Data saturation was discussed and found adequate.

consent to participate without interference in their care and treatment on the acute ward. In the mental health organisations, possible participants were informed by the contact person. The named contact person from each organisation contacted the named member of the research team (ML) in order to arrange a suitable interview date. Participants totalled 21, of whom 13 were female and eight were male. Of the participants six were inpatients, of whom three were female and three were male. The focus group in the first organisation included seven service users, five female and two male. The focus group of the other organisation consisted of eight participants, five female and three male. All participants had mental health problems or mental illness or a history of mental health problems. Before starting each focus group interview, all participants were given an opportunity to ask questions prior to giving their written consent. Three focus groups were conducted in October 2016. Group interviews were held in places familiar to the participants. In the mental hospital, the interview was carried out in the group room of a ward, and in the service user organisations the interviews were conducted in the respective premises. The focus groups lasted between 51 and 96 min. Each group was managed by two researchers covering the roles of lead facilitator (ML) and co-facilitator (JN), and a trained expert-by-experience as a co-facilitator. The researchers were both registered psychiatric nurses and held either a PhD (ML) or Master's degree (JN) in nursing sciences. The trained expert-by-experience had lived experience of mental health problems and services and also experience of group interviews. Her experiential knowledge of using mental health services helped participants to feel at ease and secure, and to talk about sensitive matters. She ensured that the focus remained on service users' perspective for the whole interview and asked additional questions when needed. In every focus group interview, only the participants and the researchers were present, and no background information was collected from the participants. The interviews were semi-structured, and the themes were based on the aim of the study with additional supporting questions available. The focus group themes were broad, covering the meaning of the concept of user involvement, the participants' own experiences of user involvement, matters that promote or prevent user involvement and future needs for the further development of user involvement. The themes enabled the participants to freely express their views on service user involvement in mental health services, and to discuss matters concerning involvement that were important to them. The facilitators discussed the importance of appreciating and respecting the opinions of others and of maintaining confidentiality. They also made sure that each participant felt comfortable taking part and voicing their opinions prior to the start of the focus group. All focus groups were digitally audio-recorded and the researchers made field notes during the interviews. In line with ethical guidelines, before each focus group interview started participants were assured that they were free to leave at any point. In one focus group interview two participants wanted to leave after giving written consent but before the interview started.

Ethical considerations The study procedure was evaluated by the local Medical Ethics Committee and was found to comply with the Declaration of Helsinki (World Medical Association, 2013). Permission to conduct the study was obtained from the organisations' directors. Written and oral information on the study was offered to participants, and their willingness and informed consent to participate in the study were ascertained orally and by written consent form. Assurances of anonymity, confidentiality and participants' right to withdraw from the study at any time were given. Permission for tape-recording was requested before starting the interview. Data were treated in confidence. Results In all focus groups the discussion on the topic was lively. In the focus group in the psychiatric hospital the discussion started more slowly but after a while the participants found courage to express their views. The results are presented in accordance with the research questions. The main categories were service user involvement in mental health care, factors promoting service user involvement, factors inhibiting service user involvement, and improving service user involvement in mental health care. Service user involvement in mental health care Service user involvement means that service users are respected and appreciated, that they are listened to and can act in co-operation with professionals so than they feel that they can influence their own care and treatment. Feeling respected and appreciated means being able to give feedback about services, being appreciated as an expert of one's own situation and being given a voice. In general, giving feedback is not easy, and the participants preferred giving feedback anonymously via structured questionnaires or websites. All participants in the focus groups discussed the importance of appreciation and respect, and this was one of the first issues to emerge during the focus group interviews. Several participants in all focus groups pointed out that in care and treatment patients themselves are the best experts in matters concerning care planning.

Data analysis

“Last time when I was in hospital I noticed that the services had improved a lot. I think they listen carefully to the feedback given, not only the positive points, and make improvements.” Interview 2, Male 1.

Audio-recorded interviews were transcribed verbatim and anonymised prior to data analysis. According to Elo and Kyngäs (2008) qualitative analysis process has three main phases: preparation, organising and reporting. To summarise this process, the researchers familiarized themselves with the data by reading and rereading it and at the same time listening to the recordings of the focus group interviews. After making sense of the data, the next step was to organise the data by open coding, creating categories and abstracting. The analysis followed the qualitative content analysis process using deductive-inductive approach (Graneheim & Lundman, 2004) described in detail below. In the first phase the study the data analysis was driven by the aim and research questions. Original expressions relevant to the aim of the

Co-operation takes place both with nursing staff and with other members of multi-disciplinary team. Some of the participants pointed out that mental health care and treatment is a multidimensional matter where all members of the team are valuable. For example, in care planning it is important for the doctor to hear what the patient's therapist has to say about the patient. “It has been really important to me when planning future care and treatment that it has been possible to visit different places: to see and 3

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

treatment process of course if you get along very well with your named nurse it makes a big difference, that's why I think it's very important that relationship there.” Interview 1, Female 2.

discuss with the people there before making any decisions.” Interview 3, Female 2. Exerting of influence in one's own care and treatment implies that service users have an opportunity to use their personal resources individually during the care. One of the participants recounted how he had been able to use his English skills and give language lessons during the treatment. Influencing also refers to being able to participate in activities provided by the service system. For inpatients, participation can be realised on a daily basis by taking part of different group sessions or exerting influence in weekly ward meetings. In community care, participation can be realised in planning activities in the rehabilitation centre or participating in different activities. The participants also valued having a choice whether to participate or not.

Factors inhibiting service user involvement Service user involvement may be inhibited by factors related to professionals, to co-operation between a service user and a professional, to the mental health care system and to service users themselves. The service users in this study described how deficits in professionals' knowledge and skills may inhibit service user involvement. According to the participants, the doctors` knowledge about medicines and medication was deemed vital in the treatment process. In every focus group there were discussions about how service users got into situations in their treatment process in which they did not fully trust the doctor's knowledge concerning medication, especially if the treating doctor was not a psychiatrist. Some participants had encountered situations in their treatment when they felt they had to educate professionals, for example about eating disorders at the same time as they were treated. They emphasised the importance of skilful and competent staff members for service users.

“When I think about involvement I think it may be a small thing, like when I am a client in a day rehabilitation centre and there we plan together what kind of flowers we are going to plant outside in the garden, such a tiny things, we are going to buy violets or something else and who is going to plant them and where and how.” Interview 3, Female 5. Factors promoting service user involvement

“...which is extremely regrettable; the doctors should be aware of things and in no case should the responsibility be on what somebody found using Google.” Interview 2, Male 1.

According to the participants, three main issues promote service user involvement: a mental health care system stressing patient involvement, patient-centred care and treatment, and a good co-operation relationship. A mental health care system focused on patient involvement means that the basic elements are in order, including adequate resources to provide care and treatment for people needing it. Care pathways should be functional so that service users can move easily within different services and, for example, from in-patient to outpatient care and back if necessary. The service users participating in this study reported that “knowing the rules”, that is, having a shared understanding with the professionals of how the system works, promotes participation and involvement.

Insufficient exchange of and access to information was one of the key themes inhibiting the realisation of service user involvement according to the focus group interviews. The participants also talked about experiences when the professionals did not seem to be interested in a service user's problems or situation. Some participants reported that in every appointment they had to repeat the same things so that they spent 15 min of every 45-min session on this, which frustrated them. Many of the service user participants in the study had negative memories of situations where they had encountered disrespectful treatment or behaviour on the part of professionals. They discussed situations during their treatment when patients are treated like air or as if they were not even present.

“When you behave like a good girl and do everything you are told then suddenly you have the chance to do this and that and well, the nurses allow you to do things.” Interview 2, Female 3.

“It often goes in such a way that the patient shares all what is going in his / her life but when it's time to plan care and treatment or rehabilitation it's all about professionals doing the planning without the patient participating.” Interview 2, Female 3.

Patient-centred care and treatment entails competent staff and shared decision-making between service user and professionals. Some participants pointed out that when evaluating a patient's situation, it is important to know how that specific illnesses affect the person so that professionals know “when the illness is speaking” and not the person. Shared decision-making is most efficient when both professionals and service users share all relevant information concerning care and treatment, and then make the decision together.

A factor related to interaction impeding user involvement was the lack of discussions or professionals' reluctance to discuss medication with a service user. One participant described a situation when he was treated on an acute closed ward and had an agreed home leave coming the following weekend. On the day before the leave, a nurse announced that without consulting the patient the doctor had ordered a new medication starting on Friday and the home leave was cancelled. Another factor related to interaction is that service users are not treated as experts on their own situations and that they were not listened to. The participants described how unsuccessful interaction between a service user and a professional may inhibit involvement.

“That co-operation needs to get working well, patient should be listened to and decisions should be made together.” Interview 2, Male 1. As a part of a good co-operation relationship between service user and professionals the participants talked about the importance of a service user's own wish to get care and treatment. Participants discussed their motivation to seek treatment from various service providers or to regain their ability to work. Some of the participants had experiences of involuntary treatment in acute closed wards, but they did not think that it would automatically harm a good co–operation relationship in the treatment process in general. The participants emphasised the meaning of appreciative contact and good interaction between service user and staff. An example of appreciative contact is that professionals should listen to service users' opinions as to which family members she/he wants to include in the treatment process. Some participants discussed the meaning of basic things like eye contact with the patient for good interaction.

“About evening medications, it was just announced that this is your medication now and there was no alternative but to take them.” Interview 2, Male1. They also described factors related to the mental health care system. From the service user's point of view, the mental health care system appears to be inflexible and rigid with different rules and, for example, different referral practices. Some participants described situations when one treatment contact finishes in one place, and before next treatment contact starts there is a gap with no contact at all. The participants felt that the mental health care system and separate inpatient and outpatient services did not support continuity of care. One of the major

“…yeah, it's a really important part that, with your own named nurse you talk all discussions, because it's a very important part of the 4

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

Discussion

barriers to involvement according the participants was the lack of time and other resources. Participants discussed staff's lack of time and hurry. Lack of time was present in both inpatient and community care. On the wards patients with serious mental problems and ward routines like medication and mealtimes consume staff's time resources. In an outpatient clinic 45 min is allotted for one patient and then the next one is at the door.

According to the service users participating in this study, service user involvement can be realised in three ways; as having an opportunity to exert influence over their own care and treatment, as being respected and listened to, and in co-operation between a service user and a professional. The desires expressed are in line with those reported in the study by Chambers, Gillard, Turner, and Borschmann (2013), where service users wished to be treated with more respect and dignity, to be more involved in decisions regarding their own care, to have more information, to be given more access to talking therapies and other activities and to be listened to by members of staff. The participants emphasised a strength-based approach, where their personal strengths, opinions and wishes would be taken seriously. Bee, Price, Baker, and Lovell (2015) have also stated that service users and carers prefer strength-based approaches that are based on recovery and hope. One might argue that the desires of service users - for example being treated with dignity and respect - are basic elements of human interaction and patient-centred care, and that they should indeed be realised in 21st century mental health care. Chambers et al. (2013) have reported quite critically that mental health nursing has not moved forward when it comes to interaction with service users and communication skills on a daily basis even if the need for change has been known for decades. An interesting finding was that the participants in our study only described service user involvement in their own care and treatment. Even though the participants of two focus groups were members of user organisations, there were no statements on service user involvement in relation to the further development or commissioning of mental health services. This finding differs from the results of an earlier study in Finland (Laitila et al., 2011), where service users described their involvement in the planning and development of mental health services. Involvement on the level of individual care and treatment might be more common and evolve faster than on a wider organisational level (Omeni et al., 2014; Rise, Grimstad, Solbjør, & Steinsbekk, 2011). Feeling involved in one's own care and treatment is essential and must not be underestimated. As Elstad and Eide (2009) stated, involvement on an individual level should not be viewed as inferior to other forms of involvement. Interaction with staff members and participating in different activities can be crucially important for people using mental health services. The participants emphasised the need to be more involved in decision-making about their own care and treatment. They felt that they were given too little information, and that information about medications was especially inadequate. Poor information exchange and the need for information about medications and related choices is one of the main barriers to meaningful service user involvement in care planning, leaving users excluded from the process (Bee et al., 2015; Bower et al., 2015). A shared decision-making model could be an approach where service users and professionals can in partnership and dialogue talk about medications and risks and consequences of taking or not taking it. In a model of partnership, taking medication is more likely to be perceived as a part of the recovery process. (Storm & Davidson, 2010.) Shared decision-making can be a means to achieve greater involvement, better satisfaction with the treatment and better health outcomes (Coffey, Hannigan, Meudell, Hunt, & Fitzsimmons, 2016). Rise et al. (2013) named shared decision-making as the aim of patient and public involvement. In their qualitative study involvement was described as a process based on mutual respect and carried out through dialogue in order to achieve shared decision-making. The participants reported that one of the barriers to service user involvement was organisational inflexibility, lack of resources and time. Even though the starting point of service user involvement on an individual level is the interaction between a service user and a mental health professional (Richter et al., 2009), working in a more involving manner also requires organisational support (Storm, Knudsen, Davidson, Hausken, & Johannessen, 2011). Demands to increase

“Just being on the ward was hard but you didn't know what was going on because I couldn't get in contact with nurses properly because they were quite busy almost all the time.” Interview 2, Female 3. There were also factors related to service users themselves that might inhibit service user involvement. The participants described situations when a service user is not willing to participate or be involved or when a service user's mental condition is not equal to involvement. Some participants discussed situations when taking control of one's everyday life is difficult, and they felt that in those situations it was better for a service user's well-being not to be involved or participate in decision-making. “…yes, I have had psychotic episodes and I am very pleased that the professionals did not listen to my requests.” Interview 3, Female 2. Improving service user involvement in mental health care According to the service users who took part in this study, service user involvement can be improved by strengthening service users´ position, by further developing the mental health care system and by further developing professionals´ education. In order to strengthen service users' position, there is a need for new options and to make better use of existing options for taking account of service users' views, and to really take note of their feedback. Strengthening the position of service users consisted of simple and everyday matters. Service users need professionals to explain and reason all relevant matters concerning their care and treatment. One participant wished that professionals could give relevant information early enough so there would be enough time to consider and make important decisions concerning one's life, like early retirement. The participants discussed how feedback could be collected more systematically from both those currently using mental health services and those with experience of using services. “On that ward those of us who use the services a lot and are always on the same ward, well, people like that, they develop ideas about how things should be done.” Interview 2, Female 3. The mental health care system can be improved by further developing the practical content of care and treatment and also by improving services and co-operation within these. According to the participants, one of the most important service improvements would be the opportunity to get all the necessary treatment from one place. There is also a lack of more individual care paths for patients. The development of various on-line services was seen as an important improvement. “You could, like, get all the help you need from one place.” Interview 3, Female 2. The participants called for better application and selection of processes in professional education and in the content of professionals´ basic and continuing education. They pointed out that co-operation and interaction skills and competence are as important as other professional skills and competence. Participants from mental health organisations in particular discussed the need to utilise trained experts-by-experience as lived-experience educators in both basic and continuing education. “Well I would say both, and I would further say that doctors and nurses should have compulsory lectures by experts-by-experience.” Interview 3, Female 4.

5

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

the study. This may have affected which patients actually participated in the focus groups. It is important that people, even those with severe mental health problems, have opportunities to participate in research (Davies, 2005), and that their abilities are not underestimated, but participants must also be competent to give informed consent (Roach, Duxbury, Wright, Bradley, & Harris, 2009). Willingness to participate was rechecked before each focus group interview started. Two participants from the psychiatric hospital group wanted to leave after giving written consent but before the interview started. The researcher's position and environment during on the focus groups may influence the discussion and further impair the credibility of the study (Polit & Beck, 2010). This was taken into account by organising the groups in places familiar to the participants and using a trained expert-by-experience as a co-facilitator so that the participants could feel at ease and secure. In addition, all facilitators were familiar with mental health problems and the interview method. One important issue in qualitative research is the transferability or generalizability of the results. This refers to the external validity of the study, where adequate and sufficiently varied sample size is key. (Malterud, 2001) In this study, all participants lived in western Finland and had used the mental health services there. Thus generalization of the findings requires caution. However, the sample size was appropriate for the focus group method and it produced saturated data. Moreover, in this qualitative study the focus was on exploring service users' views rather than generalization of the findings. To enhance the credibility, dependability and confirmability of the results a systematic procedure was used. Focus group interviews were chosen as the method of data collection because they enable participants to talk freely with other group members in an interactive group setting (Barbour, 2005). Individual interviews might have produced different or more in-depth information about the phenomenon (Grundy et al., 2016). Interviewing the participants more than once would perhaps have improved credibility (Tobin & Begley, 2004). To enhance the dependability of the study the coding process and categories used were discussed among the authors (Graneheim & Lundman, 2004; Silverman, 2005). The analysis process has been described transparently and several quotations were included in the Results section, which increases the confirmability of the study (Elo & Kyngäs, 2008). The trained expert-by-experience did not participate in the analysis process. Her participation as well as the participants' confirmation of the findings, which was not done for practical reasons, would have improved confirmability (Graneheim & Lundman, 2004).

caseloads and to limit staff's face-to-face contact time with service users may be one of the barriers to service user involvement (Bee et al., 2015). Rise and Steinsbekk (2015) found in their study that in order to have measurable changes in service user involvement, the organisational change must be carried out in every aspect of the organisation's services. The participants conceded that in some cases service users were not able or motivated to participate or be involved. This might be the case, for example, during a period of major depression or psychotic behaviour. In general, service users wanted to be involved and considered involvement a key aspect of patient-centred care. Earlier studies (Bee et al., 2015) have reported similar results. In our study, the participants did not mention having experienced any negative effects of service user involvement as reported in the study by Omeni et al. (2014). The participants felt grateful to staff for not listening to them while they were seriously mentally ill. As in the study by Solbjør, Rise, Westerlund, and Steinsbekk (2013), participation and involvement must be redefined and reconsidered so as to optimally accommodate that service users' best interests. Our findings suggest that professional judgement and sensitivity are needed so that service users could be involved and participate in every stage of their treatment. Possible variation in service users' ability and motivation to be involved may pose a dilemma for mental health professionals when they have to balance between the demands of involving users and respecting their rights to decide on the degree of involvement (Elstad & Eide, 2009). The service users who participated in this study called for better care planning and co-ordination as one way to increase service user involvement. They were frustrated because relevant information was not transferred, for example, from in-patient to out-patient care. Being forced to retell their own stories over and over again felt disrespectful and improper. Bee et al. (2015) noted that administrative and communicative breakdowns impede service users' ability to participate in care planning. Another means to increase service user involvement would be the further development of basic and continuing training for different groups of professionals. Establishing training programmes for both service users and staff has been mentioned as a precondition for service user involvement (Richter et al., 2009). Mental health care professionals have also reported deficiencies in skills to involve service users and called for training and tools to advance communication and involvement (Storm & Davidson, 2010). Involving service users in the training of mental health professionals might improve their attitudes towards mental health service users (Rise & Steinsbekk, 2015). The research interest in service user involvement has remained high. This might suggest that translating theory into practice has not yet succeeded. (Bee et al., 2015.) There is a growing emphasis on service user involvement in Europe and in North America (Omeni et al., 2014). Mental health care has a long history of stigma and myths, and changes in culture and attitudes might take longer to realise (Rise & Steinsbekk, 2015).

Conclusion In light of the results of this study, the views of service users concerning the realisation of user involvement in mental health services and the factors promoting and inhibiting it were realistic. They are basic elements of patient-centred care and all human interaction. The aim of our study was to examine service users' views on user involvement at all levels of mental health services, but the participants focused on service user involvement in their own care and treatment. They emphasised the need to have more information, especially on medications, and wanted to be more involved in decision-making about their own care and treatment. The service users who participated in this study called for better care planning and co-ordination as one way to increase service user involvement. These have also implications for the system level of mental health services. In order to increase service user involvement in mental health services, special attention should be paid to the creation of care pathways and the training of different groups of professionals.

Strengths and limitations The strength of this study lies in the use of a qualitative research method and participants representing different types of service users. Qualitative study results can improve or at least strengthen the understanding of the target phenomenon. To achieve this the methods should ensure relevance, validity and reflexivity (Malterud, 2001). To answer the research questions we chose the focus group method and content analysis to collect comprehend the unique thoughts, expectations and needs of mental health service users themselves (Fern, 2001). All procedures for fulfilling qualitative methodological principles were reported (Elo & Kyngäs, 2008; Silverman, 2005). Due to the mental health care legislation regarding patients in psychiatric in-patient care, we co-operated with the staff and let them do the assessment of the potential participants' ability to participate in

Conflicts of interest None. 6

Archives of Psychiatric Nursing xxx (xxxx) xxx–xxx

M. Laitila et al.

Funding

dx.doi.org/10.1111/hex.12353. Ministry of Social Affairs and Health (2010). Plan for mental health and substance abuse work. Proposals of the Mieli 2009 working group to develop mental health and substance abuse work until 2015. Reports of the Ministry of Social Affairs and Health 2010:5. Finland, Helsinki. Ministry of Social Affairs and Health (2014). Plan for mental health and substance abuse work. Proposals for development of mental health and substance abuse work 2015. Publications of the Ministry of Social Affairs and Health 2013:18. Helsinki: Finland. Omeni, E., Barnes, M., MacDonald, D., Crawford, M., & Rose, D. (2014). Service user involvement: Impact and participation: A survey of service user and staff perspectives. BMC Health Services Research, 14, 491. http://dx.doi.org/10.1186/s12913-0140491-7. Peck, E., Gulliver, P., & Towel, D. (2002). Information, consultation or control: User involvement in mental health services in England at the turn of the century. Journal of Mental Health, 11(4), 441–451. Petersen, K., Hounsgaard, L., Borg, T., & Nielsen, C. V. (2012). User involvement in mental health rehabilitation: A struggle for self-determination and recognition. Scandinavian Journal of Occupational Therapy, 19(1), 59–67. Polit, D. F., & Beck, C. T. (2004). Nursing research. Principles and methods(seventh ed.). Philadelphia: Lippincott. Polit, D. F., & Beck, C. T. (2010). Essentials of nursing research. Appraising evidence for nursing practice(seventh ed.). Philadelphia: Lippincott Williams & Wilkins. Richter, J., Halliday, S., Grømer, L., & Dybdahl, R. (2009). User and carer involvement in child and adolescent mental health services: A Norwegian staff perspective. Administration and Policy in Mental Health, 36(4), 265–277. Rise, M. B., Grimstad, H., Solbjør, M., & Steinsbekk, A. (2011). Effect of an institutional development plan for user participation on professionals' knowledge, practice, and attitudes. A controlled study. BMC Health Services Research, 11, 296. http://dx.doi. org/10.1186/1472-6963-11-296. Rise, M. B., Solbjør, M., Lara, M. C., Westerlund, H., Grimstad, H., & Steinsbekk, A. (2013). Same description, different values. How service users and providers define patient and public involvement in health care. Health Expectations, 16(3), 266–276. http://dx.doi.org/10.1111/j.1369-7625.2011.00713.x. Rise, M. B., & Steinsbekk, A. (2015). Does implementing a development plan for user participation in a mental hospital change patients' experience? A non-randomized controlled study. Health Expectations, 18(5), 809–825. http://dx.doi.org/10.1111/ hex.12105. Roach, P., Duxbury, J. A., Wright, K., Bradley, D., & Harris, N. (2009). Conducting research on acute mental health admission wards. Nurse Researcher, 16(4), 65–72. Roberts, M. (2010). Service user involvement and the restrictive sense of psychiatric categories: The challenge facing mental health nurses. Journal of Psychiatric and Mental Health Nursing, 17(4), 289–294. Roper, C., & Happell, B. (2007). Reflection without shame – Reflection without blame: Towards a more collaborative understanding between mental health consumers and nurses. Journal of Psychiatric and Mental Health Nursing, 14(1), 85–91. Shepherd, G., Boardman, J., & Slade, M. (2008). Making recovery a reality. London: Sainsbury Centre for Mental Health. Silverman, D. (2005). Doing qualitative research. A practical handbook (second edition). London: Sage Publications. Slade, M., Adams, N., & O'Hagan, M. (2012). Recovery: Past progress and future challenges. International Review of Psychiatry, 24(1), 1–4. Solbjør, M., Rise, M. B., Westerlund, H., & Steinsbekk, A. (2013). Patient participation in mental healthcare: When is it difficult? A qualitative study of users and providers in a mental health hospital in Norway. The International Journal of Social Psychiatry, 59(2), 107–113. http://dx.doi.org/10.1177/0020764011423464. Storm, M., & Davidson, L. (2010). Inpatient and providers' experiences with user involvement in inpatient care. The Psychiatric Quarterly, 81(2), 111–125. Storm, M., Hausken, K., & Mikkelsen, A. (2010). User involvement in in-patient mental health services: Operationalisation, empirical testing, and validation. Journal of Clinical Nursing, 19(13–14), 1897–1907. Storm, M., Knudsen, K., Davidson, L., Hausken, K., & Johannessen, J. O. (2011). “Service user involvement in practice”: The evaluation of an intervention program for service providers and inpatients in Norwegian community mental health centers. Psychosis, 3(1), 29–40. Tambuyzer, E., Pieters, G., & Van Audenhove, C. (2014). Patient involvement in mental health care: One size does not fit all. Health Expectations, 17(1), 138–150. Thompson, A. G. (2007). The meaning of patient involvement and participation in health care consultations: A taxonomy. Social Science & Medicine, 64(6), 1297–1310. Tobin, G. A., & Begley, C. M. (2004). Methodological rigour within a qualitative framework. Journal of Advanced Nursing, 48(4), 388–396. World Medical Association (2013). Declaration of Helsinki. Ethical principles for medical research involving human subjectshttp://www.wma.net/en/30publications/ 10policies/b3/index.html, Accessed date: 4 April 2015.

No external funding. References Barbour, R. (2005). Making sense of focus groups. Medical Education, 39, 742–750. http:// dx.doi.org/10.1111/j.1365-2929.2005.02200.x. Bee, P., Price, O., Baker, J., & Lovell, K. (2015). Systematic synthesis of barriers and facilitators to service user-led care planning. The British Journal of Psychiatry, 207(2), 104–114. http://dx.doi.org/10.1192/bjp.bp.114.152447. Borg, M., Karlsson, M., & Kim, H. S. (2009). User involvement in community mental health services – Principles and practices. Journal of Psychiatric and Mental Health Nursing, 16(3), 285–292. Bower, P., Roberts, C., O'Leary, N., Callaghan, P., Bee, P., Fraser, C., ... Lovell, K. (2015). A cluster randomised controlled trial and process evaluation of a training programme for mental health professionals to enhance user involvement in care planning in service users with severe mental health issues (EQUIP): Study protocol for a randomised controlled trial. Trials, 16, 348. http://dx.doi.org/10.1186/s13063-0150896-6. Chambers, M., Gillard, S., Turner, K., & Borschmann, R. (2013). Evaluation of an educational practice development programme for staff working in mental health inpatient environments. Journal of Psychiatric and Mental Health Nursing, 20(4), 362–373. http://dx.doi.org/10.1111/j.1365-2850.2012.01964.x. Clark, M., Davis, M., Fisher, A., Glynn, T., & Jefferies, J. (2008). Transforming services: changing lives. A guide for action. Working for user involvement in mental health services. Paper 3Birmingham: Centre for Excellence in Interdisciplinary Mental Health. University of Birminghamhttp://suresearch.org.uk/wp-content/uploads/2015/11/ guide-transforming-services-2010.pdf, Accessed date: 8 January 2017. Coffey, M., Hannigan, B., Meudell, A., Hunt, J., & Fitzsimmons, D. (2016). Study protocol: A mixed methods study to assess mental health recovery, shared decision-making and quality of life (Plan4Recovery). BMC Health Services Research, 16(1), 392. http://dx. doi.org/10.1186/s12913-016-1640-y. Crawford, M. J., Aldridge, T., Bhui, K., Rutter, D., Manley, C., Weaver, T., ... Fulop, N. (2003). User involvement in the planning and delivery of mental health services: A cross-sectional survey of service users and providers. Acta Psychiatrica Scandinavica, 107, 410–414. Dahlqvist, J. P., Schön, U. K., Rosenberg, D., Sandlund, M., & Svedberg, P. (2015). Service users' experiences of participation in decision making in mental health services. Journal of Psychiatric and Mental Health Nursing, 22, 688–697. Davies, B. R. (2005). Coercion or collaboration? Nurses doing research with people who have severe mental health problems. Journal of Psychiatric and Mental Health Nursing, 12(1), 106–111. Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. http://dx.doi.org/10.1111/j.1365-2648.2007.04569.x. Elstad, T. A., & Eide, A. H. (2009). User participation in community mental health services: Exploring the experiences of users and professionals. Scandinavian Journal of Caring Sciences, 23, 674–681. http://dx.doi.org/10.1111/j.1471-6712.2008.00660.x. Fern, E. F. (2001). Advanced focus group research. London: Sage Publications. Gee, A., McGarty, C., & Banfield, M. (2016). Barriers to genuine consumer and carer participation from the perspectives of Australian systemic mental health advocates. Journal of Mental Health, 25(3), 231–237. http://dx.doi.org/10.3109/09638237. 2015.1124383. Goodwin, V., & Happell, B. (2006). In our own words: consumers' views on the reality of consumer participation in mental health care. Contemporary Nurse, 21(1), 4–13. Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. Grundy, A. C., Bee, P., Meade, O., Callaghan, P., Beatty, S., Olleveant, N., & Lovell, K. (2016). Bringing meaning to user involvement in mental health care planning: A qualitative exploration of service user perspectives. Journal of Psychiatric and Mental Health Nursing, 23(1), 12–21. http://dx.doi.org/10.1111/jpm.12275. Laitila, M., Nikkonen, M., & Pietilä, A. M. (2011). Involvement in mental health and substance abuse work: Conceptions of service users. Nursing Research and Practice672474. http://dx.doi.org/10.1155/2011/672474. Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. Lancet, 358(9280), 483–488. McCann, T. V., Clark, E., Baird, J., & Lu, S. (2008). Mental health clinicians' attitudes about consumer and consumer consultant participation in Australia: A cross-sectional survey design. Nursing and Health Sciences, 10, 78–84. Millar, S. L., Chambers, M., & Giles, M. (2015). Service user involvement in mental health care: An evolutionary concept analysis. Health Expectations, 19(2), 209–221. http://

7