Professional views of supporting relatives of mental health clients with severe mental illness

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1 682268ISP / VilhauerInternational Journal of Social PsychiatryHjärthag et al. Orignal-article2016 Original article E CAMDEN SCHIZOPH Professional views of supporting relatives of mental health clients with severe mental illness International Journal of Social Psychiatry 2017, Vol. 63(1) The Author(s) 2016 Reprints and permissions: sagepub.co.uk/journalspermissions.nav DOI: journals.sagepub.com/home/isp Fredrik Hjärthag 1, Karin Persson 2, Karin Ingvarsdotter 2 and Margareta Östman 2 Abstract Background: Supporting families where one person suffers from long-term severe mental illness (SMI) is essential, but seems hard to reach. The aim of this study was to examine professionals views of supporting relatives of persons with SMI. Material: Individual interviews mirroring personal narratives and group interviews reflecting group-processed answers were conducted among 23 professionals and analyzed thematically. Results: Three themes emerged: (a) information and group interaction reduces stigma and increases well-being, (b) professionals need to feel secure and confident about how the support structure works and (c) collaboration is difficult but required on several levels. Conclusion: Trusting relationships with families were considered important, although seldom achieved; professionals wished to feel secure in their role toward relatives of a person with SMI; and professionals wanted to feel confident when working together with other services to support families. Keywords Severe mental illness, family member, professionals, support, family intervention Introduction Families with a member suffering from severe mental illness (SMI) experience significant negative consequences, known as family burden, in several areas of life. These include work, recreation, income, parenting, health and social relations (Awad & Voruganti, 2008; Caqueo-Urízar, Gutiérrez-Maldonado, & Miranda-Castillo, 2009; Caqueo- Urízar et al., 2014; Hjärthag, Helldin, Karilampi, & Norlander, 2010; Östman, Wallsten, & Kjellin, 2005). The term family burden refers to the consequences for all family members and encompasses relations within the family as well as effects extending to daily life and on social networks. It does not merely refer to the experience of living with a person with a psychiatric illness, but also concerns the family member s interaction with the system of psychiatric care, the welfare system and the general legal context of a society that is often indifferent or stigmatizing. Professional support to such families may alter their situation, reduce their burden and increase their sense of security (Bademli & Cetinkaya Duman, 2014; Chien & Norman, 2009; Kopelowicz et al., 2012; Rummel-Kluge, Pitschel-Walz, Bäuml, & Kissling, 2006). Since the Psychiatry Reform, of 1996, the Swedish structure of psychiatric care entails a shared care mandate between county and municipal services when supporting individuals with SMI and their families, where county services are to provide inpatient and outpatient health care, while municipalities provide the societal support in everyday life, for instance supported housing, daily activities or support adherence to treatment. This support structure differs from other countries where there is more unambiguous responsibility. Moreover, the inclusion of families in these services is recommended in the guidelines established by the National Board of Health and Welfare (Socialstyrelsen, 2011). These guidelines are built on existing evidence for psycho-educational methods that foster the patient s recovery and reduce the emotional climate in the family (Pharoah, Mari, Rathbone, & Wong, 2010; Pharoah, Rathbone, Mari, & Streiner, 2003). Such psycho-educational methods may also reduce family burden (Macleod, Elliot, & Brown, 2011). However, when introducing these interventions in clinical settings, mental health professionals worldwide have had difficulties finding a relative who could provide support, deciding which specific psycho-educational model to use, and adapt the chosen model to the resources of the specific case (Cohen, Glynn, Hamilton, & Young, 2010; 1 Department of Psychology, Karlstad University, Karlstad, Sweden 2 Faculty of Health and Society, Malmö University, Malmö, Sweden Corresponding author: Margareta Östman, Faculty of Health and Society, Malmö University, SE Malmö, Sweden. margareta.ostman@mah.se

2 64 International Journal of Social Psychiatry 63(1) Cohen et al., 2008; Glanville & Dixon, 2005; Marshall & Solomon, 2004). In contrast to the diversity of psychosocial interventions provided by the psychiatric services, Östman and Björkman (2015) found that there is a shortage of family interventions for people with SMI provided within municipalities. Defensive cultures among staff members may be barriers hindering implementation of support programs for families (Ingvarsdotter, Persson, Hjärthag, & Östman, 2016). As a result, people with a long-term SMI and their families are often left without the support of methods that include family members (Marshall & Solomon, 2004; Resnick, Rosenheck, Dixon, & Lehman, 2005; Rummel- Kluge et al., 2006). One necessity for increasing such evidence-based support is the endorsement of those interventions by professionals in service organizations. There has been little research into professionals perceptions of factors that facilitate or act as barriers when supporting families that include a member with SMI (Macleod et al., 2011). In addition, research into situations involving a shared mandate to support those with SMI and their families is considerably lacking. The aim of this study was to examine professionals views of providing support to relatives of mental health service users who have a long-term SMI in a care-mandated structure shared between psychiatric health care and municipality services. Methods A qualitative method was used, where semi-structured interviews were conducted, transcribed and then analyzed with a thematic analysis (Braun & Clarke, 2006). Our coding in this thematic analysis was carried out in search for patterns that reflected professionals views of reality regarding the provision of support for relatives. However, this realist theoretical approach was not to result in themes only on a semantic level but also aimed at identifying latent underlying meanings among the responses. Sampling frame A convenience sampling was performed in 10 different municipality services and county council psychiatric services in the middle and south of Sweden with professionals participating in the study Family Interventions for Relatives of persons with severe mental illness (FaIR) from which some parts have previously been reported (Ingvarsdotter et al., 2016). FaIR is a Swedish feasibility study for introducing a psycho-educational multifamily group treatment developed by McFarlane (2002). We interviewed health care professionals who were working as case managers, social workers, psychiatric nurses, physiotherapists or psychologists, all of whom with many years experience of providing mental health care for people with long-term SMI. A total of 15 interviews were conducted among 23 interviewees. Nine of the interviews were done in county councils (n = 9) and six in municipalities (n = 14). A total of 16 participants worked only clinically with treatment and support, while 7 who had a clinical background also worked part-time in leading positions. Data collection A semi-structured interview guide that allowed the interviewer to ask follow-up questions (Appendix 1) was created by the research team in collaboration with an external advisory board of six members trained in research methodology who had either used mental health services themselves or were relatives of people who had used mental health services. The questions focused on what interviewees found important in their professional work when supporting relatives of people with long-term SMI. Some questions also asked how interviewees related their professional work to a model of psycho-educational multifamily group treatment. The research team invited 10 shared-care services who partook in the FAIR study to participate in this interview study, and professionals from all services showed an interest to do so. Those individuals were then contacted by phone or and were informed that the study was voluntary. Participation was preceded by written informed consent. All interviews were conducted during working hours at places chosen by the interviewees. In order to obtain a broad picture of support given to families, we conducted individual interviews that mirrored accurate personal narratives, and group interviews reflected more extroverted group-processed answers. There was no specific plan for the distribution of individual interviews and group interviews over services. Since we strived to be flexible to our participants when sampling, practical reasons and coincidences caused that all group interviews were done in municipalities. In all, 10 of the interviews were conducted individually, while 5 were carried out in groups of two (n = 3), three (n = 1) or four participants (n = 1). Two individual interviews were done over the phone. The interviews lasted between 60 and 110 minutes, with more time taken by the group interviews. All interviews were audio recorded and transcribed by the interviewer for analysis. Only verbal communication was transcribed into written verbatim, thus leaving non-verbal communications, such as gestures, outside our analysis. Interviews were conducted, transcribed and analyzed in Swedish. The data collected comprised 128 pages of written transcript. The study was carried out in accordance with the ethics guidelines of the latest Declaration of Helsinki and was approved by the Regional Ethics Board in Lund, Sweden (Approval Number 2013/46).

3 Hjärthag et al. 65 Table 1. How potential themes from third step of thematic analysis were merged into final themes. Potential theme name Final theme name Support based on need for information Information and Reducing stigma and loneliness group interaction reduces stigma and Support from others increases well-being Working in a group Evidence-based models Pedagogic presentation and instructions in Swedish Clear structure for implementation Need for supervision View of municipal organizations View of county council organizations Importance of an alliance get to know relatives Motivational work Support based on homogeneous groups or not? Analysis A thematic analysis was used in accordance with the steps described by Braun and Clarke (2006) to identify, analyze and report themes. In the first step, all transcribed interviews were read through, and patterns in data were sought. In the second step, preliminary data-driven codes were assigned in relation to the purpose of the study, and all material was read through again. Coding was carried out manually on post it notes and no statistical package was used. In the third step, those initial codes that seemed to cover similar topics were clustered into potential themes (Table 1). In the following fourth step, a critical review of the 13 potential themes was conducted on two levels. At first, the parts constituting each potential theme were examined to determine if that theme seemed valid. If so, on the second level, all transcriptions were read through again in search of a consistent pattern that could confirm and strengthen the potential theme. In both levels of this step, coherence within themes and clear distinctions between themes has been important to achieve. As the fifth and final step, each remaining theme was given a definition and a name. Those themes were then as a sixth step reported in the Results section with supporting extracts from data (Braun & Clarke, 2006). Our findings were discussed within the whole research team to increase coherence. Preliminary results were also discussed with the external advisory board of persons who either had used mental health services themselves or were relatives of people who had used mental health services. Results Professionals need to feel secure and confident in how the support structure works Collaboration is difficult but required on several levels We found three themes: (a) information and group interaction reduces stigma and increases well-being, (b) professionals need to feel secure and confident about how the support structure works and (c) collaboration is difficult but required on several levels. Information and group interaction reduces stigma and increases well-being Interviewees readily identified the most important areas for families to be supported in as being those concerning information about the mental illness or disorder of their next of kin. Many were confident in their identification of these areas, but only a few said they had discussed these issues with any relatives. Instead, many interviewees proposed having lectures by a physician as a means of informing relatives about the background and treatment of the mental disorder. They trusted that increased knowledge would reduce potential stigma and reduce feelings of guilt. For example, one interviewee said, I also think that relatives greatly need... to get an explanation as to what happened and why, and be able to reduce the shame and guilt (Interviewee 9, interview 6). Another proposed handling stigma and solving everyday problems by having relatives in similar situations meet in groups. Some thought that the groups could consist of both the mental health service clients and their relatives, whereas others argued that only the relatives should participate. I believe that meeting others to share experiences is good. I think that that s what should constitute the foundation (Interviewee 3, interview 3). It was said that group sessions help individual relatives feel less unique or less alone with his or her problems, thus providing helpful social support. One interviewee said, They will get to discuss things and relieve themselves of some of the stress that they, as relatives, have. I think they actually think they need to because they have a very heavy burden to bear (Interviewee 11, interview 8). Interviewees also stated that relatives have to be taught to identify signs that may indicate an increased risk of relapse. By looking for early signs of relapse, interviewees found that relatives became more involved in helping their family members improve their health in the long run. Relatives also may be taught how to solve problems of everyday living that affect mental health patients. More work could be done... so relatives become involved in the care and the treatment (Interviewee 4, interview 4). A relationship with the relatives built on trust and confidence was considered the basis for any structured work together. Establishing and maintaining such a relationship was considered invaluable but difficult to attain since it requires motivational work with both the mental health client and their relatives. As a result, this state is seldom achieved, regardless of the mental health problem or diagnosis. Professionals need to feel secure and confident about how the support structure works Recurring thoughts and ideas emerged, many of them related to what could or could not be managed by professionals, and the possibilities and constraints that exist in today s organizations. Several interviewees had found that any structured work to support relatives should be linked to

4 66 International Journal of Social Psychiatry 63(1) the tasks of the organizations legally. None of our interviewees were eager to handle anything within their organization for which another provider was responsible. The interviewees answers were based on their experience in using various models to work with relatives in their everyday practice. Although the results were often good, they were not following the structure of psycho-pedagogical models, and many said they had difficulties presenting new ideas. For example, some speculated whether it were possible to re-use old programs, but expand them to include relatives. Use an existing program, be clear about psycho-education, and then introduce problem solving (Interviewee 1, interview 1). Interviewees spoke of the need for a simple, clear, pedagogically sound model for providing support to families that would be easy for staff to follow. Supervision of the model was also seen as a necessity, something they claimed cannot be assumed in their organizations at present. One needs guidance and supervision from the beginning... maybe from some people who had worked with the model before and knew how to do it (Interviewee 4, interview 4). The interviewees also stressed the importance of having the entire department or clinic receive the same clear and comprehensive information about the method of applying the model. Many pointed out that working with a structure to support families takes a great deal of time, and it is essential that the time be provided. To be successful, interviewees stressed, supporting relatives must be implemented slowly and systematically across the entire organization, following a well-planned structure, and not here today and gone tomorrow. Interviewees also believed that family support should be evidence-based Now that the work will more and more follow the recommendations of the National Board of Health and Welfare, we will have to use methods that are supported by research (Interviewee 1, interview 1). Some of the interviewees who were trained in psycho-educational multifamily group treatment admitted that they had not yet applied the model in clinical practice because they feared they may be unsuccessful in using it, or they had difficulties engaging family members in the treatment plan. Collaboration is difficult but required on several levels Collaboration on several levels, from professionals establishing relationships, to recruiting relatives, to coordination between organizations, was mentioned as a vital factor when providing family support. Having individual contact with relatives before initiating any type of activity involving groups was considered essential. One interviewee remarked, This way the air will be cleared. All those things must be gotten rid of before the groups start (Interviewee 2, interview 2). There was no agreement among the interviewees on the necessity of having diagnosis-specific groups or not. It would be difficult to have diagnosis groups for a certain diagnosis only (Interviewee 18, interview 12). Support in groups was described as adequate when based on criteria other than diagnosis, such as the client s need for training in social skills, the need to support relatives through selfhelp groups or the duration of a client s illness. Many also said one must take into account the relationship between relative and the client, since parents needs, for example, differ from those of a partner. With regard to the shared care mandate for family support, the specific responsibilities of organizations differed. However, interviewees considered it important to find some common denominator that unites organizations efforts; although the shared structure had been running for many years, they experienced a need to implement a structure for collaboration. Other informants did not feel a need to collaborate with other organizations to the same extent. Nevertheless, all agreed that a structured, shared care responsibility would increase the possibilities of getting in touch with relatives who would benefit from support. Discussion Our results show that a program developed in one country and culture may not be suitably transferred to another context. The informants who had worked under the Swedish shared care mandate support structure agreed on the importance of supporting family members of long-term mental health clients with SMI, although they did not find it easy to implement in everyday clinical settings. The challenges of implementing structured family support seemed familiar to our interviewees and were also well known to subjects in previous research (Cohen et al., 2010; Cohen et al., 2008; Dixon, Adams, & Lucksted, 2000). Our informants knew about the cornerstones of intervention programs for families, while they seemed more uncertain about how the professional support should be designed in their respective services. The recognition that information can reduce feelings of guilt and increase hope for the future agrees with previous research findings (Riebschleger et al., 2008; Yeh, Hwu, Chen, Chen, & Wu, 2008). However, our results may in part be a reflection of social desirability, since many of our interviewees had a basic knowledge of family psychoeducational support, and might have been eager to show that knowledge (Riebschleger et al., 2008). As a mental illness continues, it becomes important that relatives know about the illness and its treatment since they can actively support the person with SMI, who in turn can improve health over the long term (Kopelowicz et al., 2012). Moreover, the view repeatedly expressed in the interviews that relatives also need social support has been stressed in previous studies where such support has been acknowledged as helping to break isolation and reduce

5 Hjärthag et al. 67 stigma (Chien, Chan, & Morrissey, 2007; Möller- Leimkühler & Wiesheu, 2012). Unfortunately, previous research shows that psychiatric services have problems implementing these psycho-educational methods (Cohen et al., 2010; Östman & Björkman, 2015). Establishing a stable alliance with a relative who is willing to provide support has previously been cited as an important part of how different support models work (Berglund, Vahlne, & Edman, 2003; Liberman et al., 1993; McFarlane, 2002). Despite their importance, successful examples of such alliances were scarcely encountered in the interviews. Our informants had different views on which agency should provide family interventions. The lack of consensus may be due to unclear mandates when different health care providers have to collaborate, as others have found (Andvig, Syse, & Severinsson, 2014). Also, the different care mandates might explain the different views of whether interventions should be diagnosis specific or mixed for all with SMI, since county councils are used to work based on diagnoses while municipality services are not. Despite the objective of working with families, ideas on how to provide such support to people with long-term SMI were lacking in the interviews. Perhaps this is why previous research shows that only 2% 8% of all patients with long-term SMI are given the opportunity to attend formal family support programs together with relatives (Östman & Björkman, 2015; Resnick et al., 2005; Rummel-Kluge et al., 2006). The theme called Collaboration is difficult but required on several levels told of the paramount need for inter-sectorial collaboration on different levels in a fragmented health care system, while the theme Professionals need to feel confident in how the support structure works shows that professionals wish to feel secure in their role toward relatives and toward colleagues in other services. They articulate this by insisting that a new support model should be easy to understand, linked to the legally mandated tasks of the organizations, and should involve all the professionals in the workplace in its implementation. Furthermore, emphasized by our informants, regular training and supervision of the service providers needs to be provided to improve their confidence, competence, and to make them feel secure. These findings are in agreement with a metasynthesis of facilitating and hindering factors when implementing family involvement (Eassom, Giacco, Dirik, & Priebe, 2014) which found that supervision of staff is necessary but not sufficient for a consistent involvement of families. Family work can only be implemented if this is considered a shared goal of all members of a clinical team and/or mental health service, including the leaders of the organisation. This may imply a change in the ethos and practices of clinical teams, as well as the establishment of working routines that facilitate family involvement approaches. (Eassom et al., 2014, p. 1) Strength and limitations Trying to understand efforts by professionals to improve family interventions for clients who have long-term SMI is of special importance since much research today focuses on first-episode patients. A strength of this study is the user involvement achieved by consulting with a patient s and relative s advisory board. Another methodological strength is that trustworthiness of analysis was enhanced by critical discussions with all researchers partaking. One limitation of our research, however, was the lack of the complementary perspective of the service users which is needed to have a comprehensive understanding and implementation of a particular program. Other limiting factors were the non-attendance of psychiatrists in the study and that many of our informants through our research project were aware of the core principles of psycho-educational models, which might have colored their perceptions and answers. Also, no group interviews were conducted within county councils, which might reduce diversity of information. Conclusion Mental health care professionals reported that family members of people with SMI generally need information about supporting their ill relative in everyday life. They also thought that providing this information and group interactions helped relieve family members experiences of stigma and guilt. Nevertheless, structured methods of insuring that family members are supported with this information were seldom realized in clinical setting. Although no specific support model is forwarded, trusting alliances with relatives and the mental health patient are considered the key to successful interventions. The frequency of such interventions, which are known to work, may be increased if mental health professionals feel secure in using them and feel supported by their own and collaborating organizations. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article. Funding The author(s) received no financial support for the research, authorship and/or publication of this article. References Andvig, E., Syse, J., & Severinsson, E. (2014). Interprofessional collaboration in the mental health services in Norway. Nursing Research and Practice, 2014, Article doi: /2014/849375

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7 Hjärthag et al. 69 Socialstyrelsen. (2011). Nationella riktlinjer för psykosociala insatser vid schizofreni eller schizofreniliknande tillstånd 2011 stöd för styrning och ledning [National guidelines for psychosocial interventions for schizophrenia or schizophrenia-type conditions]. Stockholm, Sweden: National Board of Health and Welfare. Yeh, L. L., Hwu, H. G., Chen, C. H., Chen, C. H., & Wu, A. C. (2008). Factors related to perceived needs of primary caregivers of patients with schizophrenia. Journal of Formosan Medical Association, 107, doi: /s (08) Appendix 1 What kind of support and interventions do families with a person with a severe mental illness need to handle their situation? Which models for support and treatment of families do you use in everyday treatment? Possibilities and barriers? What support and treatment interventions are needed? What kind of model for support and intervention would you prefer? What would be possible to offer to families in today s services? How do you think family interventions need to be supported by the service organization? Do you think this is possible? Do psycho-educative intervention models fit in with the supportive models for families you have recently used? What kind of model would you support in the future?