Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376

Vol. 4 No. 1 Winter 2020

Toronto Cityscape by artist, Mike Simon

In some ways, much of 2020 has felt like the season of winter. This winter scene by lived experience artist, Mike Simon, serves to remind us that even dark times have beauty and vibrancy. Mike's work is available for purchase and all proceeds are donated to mental health communities.

EDITORIAL

Focussing on Recovery

Simone Arbour, Holly Harris 1-3

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ORIGINAL RESEARCH

Use of experiential knowledge by mental health professionals and its contribution to recovery: Literature review

Simona Karbouniaris, Tineke Abma, Jean-Pierre Wilken, Alie Weerman 4-19

PDF HTML Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376

Narrow Normality or Inadequate Services? Supporting Citizenship for Young Adults in Challenging Situations

Randi Semb, Wenche Bekken, Marit Borg 20-34

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Social Support and Relational Recovery in the Age of Individualism A Qualitative Study Exploring Barriers and Possibilities for Social Support in Mental Health Work

Knut Ivar Bjørlykhaug, Rose-Marie Bank, Bengt Karlsson 35-55

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CONFERENCE ABSTRACTS

Refocus on Recovery Canada 2020

Refocus on Recovery Canada 2020 56-70

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Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 1

Focussing on Recovery

Arbour, Simone1 Harris, Holly1

1 Research and Academics Department, Ontario Shores Centre for Mental Health Sciences, Whitby, Canada

This work is licensed under a Creative Commons Attribution 4.0 International License.

In selecting the cover art for this issue of the journal, the Toronto Skyline, by Mike Simon jumped out at as especially fitting. In 2020, for the first time, a conference devoted to personal recovery was to launch in Toronto, Canada. With guidance and input from conference organizers in Nottingham United Kingdom, Refocus on Recovery Canada was the collective vision of the Mental Health Commission of Canada, the Canadian Mental Health Association and Ontario Shores Centre for Mental Health Sciences. This conference was set to bring together researchers, practitioners and persons with lived experience who are passionate about personal recovery and transforming the Canadian mental healthcare landscape. Unfortunately, this event did not come to pass given the global outbreak of the COVID-19 pandemic.

Although this important event was not held this year, the Journal of Recovery in Mental Health is pleased to publish a collection of abstracts that were to comprise the conference program. The Refocus on Recovery Canada conference planning committee also made the decision not to offer the event virtually as it felt collectively that much is gained by sharing not only views with one another but also a common space. The connections made either formally or in passing at events that bring together service users, providers and families can be invaluable in helping to gain an understanding of how to advance recovery and recovery-oriented practice in Canada – which is gaining traction. Within Canada, Toronto has historically served as home to many forward thinkers in terms of advancing recovery. For example, hospitals in Toronto and the Greater Toronto Area were hosts to the first recovery colleges in Canada. In addition, Mad Studies began at Ryerson University – based in Toronto. As Toronto was set to launch this important event this year, it may be of value to pause, and briefly reflect on why bringing together service users, providers and families together is import to advance the recovery agenda.

Examples of recovery-oriented practice date back centuries (Carron & Saad, 2012). For example, 200 years ago in a Paris asylum, a man became the governor of a hospital where he himself had been a patient. One of his key directives was to hire recovered patients as the chief physician found they seemed to be kind and against cruelty. By

Corresponding Author: Arbour, Simone. Ontario Shores Centre for Mental Health Sciences. 700 Gordon Street, Whitby, ON, Canada L1N 5S9 Email: [email protected]

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 2 pursuing and implementing this directive, this team had incorporated an early version of recovery-oriented practice and peer support as part of these former patients’ roles. The chief physician’s treatment approach embraced the therapeutic properties of physical activity, fresh air, connection, and conversation amongst patients (Carron & Saad, 2014). Evidently, recovery-oriented practice was used as a means to initiate system reform and improve the treatment of persons who were neurodivergent or experiencing mental distress.

Since then, the movement has spread and recovery has become a global phenomenon. This movement has largely been led by consumer/survivors/ex-patients who have come together in a variety of formats to promote and guide the recovery movement. Toronto has been and continues to be a hub for recovery activism, research, and practice. The Greater Toronto Area is home to many activists’ groups and mental healthcare facilities that have and continue to make significant strides in promoting recovery-oriented practice and challenging stigma and discrimination. With a large focus on collaboration between professionals and those with lived-experience in pursuit of education and recovery-oriented practice, programming, and research, the voices of Toronto’s recovery movement are being heard on a global scale.

In 2009, a group of consumer/survivors/ex-patients engaged in dialogue about the status and meaning of the recovery movement in Toronto (Mental Health “Recovery” Study Working Group, 2009). Through their discussions, they identified that there are three prominent ways in which recovery is seen by consumer/survivors/ex-patients in Toronto. First, recovery is seen as “a personal journey” involving self esteem and positive thinking to achieve hope (Mental Health “Recovery” Study Working Group, 2009, p.3). Recovery can also be conceptualized as a “as a social process” in which people require tangible resources such as “jobs, income, housing, safety and education” (Mental Health “Recovery” Study Working Group, 2009, p.3). Many also see recovery as a critique of structures that have and, in some cases, continue to harm those who have been psychiatrized such as “medicine/psychiatry, health care, medication/drugs, and the police” (Mental Health “Recovery” Study Working Group, 2009, p.3). This argument promotes the idea that the recovery movement must be recovered from “its increasing professionalization” (Mental Health “Recovery” Study Working Group, 2009, p.3). With so many prominent activists, advocates, lived-experience voices, researchers, and professionals, Toronto’s mental health community has the potential to continue to make significant reform in the mental health system and also guide the recovery movement back to its roots in terms of being driven by consumer/survivors/and ex-patients.

Refocus on Recovery Canada in 2020 would have further established Toronto’s status as a recovery hot-spot. Although the pandemic has sidelined the opportunity for those of us passionate about mental health to come together in person this year, there is no doubt that Refocus on Recovery Canada is on the horizon. When it is launched, there will likely be sharing of research and experiences that further our understanding of the power of recovery, and hope. This is especially important considering the impacts that these challenging times are having on mental health. The mental health community in

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 3

Toronto, Canada and abroad will likely have much to share about how we continue to share, learn and connect even when we are physically distancing.

At this time, we invite manuscripts for our upcoming issue, to be published in June, 2021. As always, we welcome original research, lived experience manuscripts as well as viewpoints and opinions that shape our understanding of recovery and recovery- oriented practice.

References

1. Carron, M. A., and H. Saad, Treatment of the mentally ill in the pre-moral and moral era: A brief report. Jefferson Journal of Psychiatry, 2012. 24(1): p. 1. 2. Mental health ‘recovery’: Users and refusers. Mental Health Recovery Study Working Group, 2012. Available from https://www.wellesleyinstitute.com/wp-content/uploads/2011/11/Mental_Health- _Recovery.pdf

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 4

Use of experiential knowledge by mental health professionals and its contribution to recovery: literature review Karbouniaris, Simone1 Abma, Tineke2 Wilken, Jean Pierre3 Weerman, Alie4

1 Research centre for Social Innovation, HU University of Applied Sciences, Utrecht, The Netherlands / Department of Medical Humanities of Amsterdam UMC, Amsterdam 2 Department of Medical Humanities of Amsterdam UMC, Amsterdam / Leyden Academy on vitality and ageing, Leiden, The Netherlands 3 Research centre for Social Innovation, HU University of Applied Sciences, Utrecht The Netherlands 4 Research group Mental health & Society, University of applied sciences Windesheim, Zwolle, The Netherlands

This work is licensed under a Creative Commons Attribution 4.0 International License.

KEYWORDS

Mental Health professionals, Experiential knowledge, Users recovery

ABSTRACT

Objective: This article explores the use of experiential knowledge by traditional mental health professionals and the possible contribution to the recovery of service users. Design and Methods: The review identified scientific publications from a range of sources and disciplines. Initial searches were undertaken in databases PsycINFO, PubMed, and Cochrane using specific near operator search strategies and inclusion and exclusion criteria. Results: Fifteen articles were selected. These were published in a broad range of mental health and psychology journals reporting research in western countries. In the

This article has been peer reviewed.

Corresponding Author: Simona Karbouniaris. Research Centre for Social Innovation, HU University of Applied Sciences, Utrecht, The Netherlands. Email: [email protected]

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 5 selected articles, a varying conceptualization of experiential knowledge was found, differing from therapeutic self-disclosure embedded in psychotherapeutic contexts to a relational and destigmatizing use in recovery-oriented practices. Nurses and social workers especially are speaking out about their own experiences with mental health distress. Experiential knowledge stemming from lived experience affects the professional’s identity and the system. Only a few studies explored the outcomes for service users’ recovery. Conclusion: A small body of literature reports about the use of experiential knowledge by mental health professionals. The mental health system is still in transformation to meaningfully incorporate the lived experience perspective from traditional professionals. There is little data available on the value for the recovery of service users. This data indicates positive outcomes, such as new understandings of recovery, feeling recognized and heard, and increased hope, trust, and motivation. More research about the meaning of experiential knowledge for the recovery of service users is desirable.

Introduction This article explores the use and possible contribution of experiential expertise of mental health professionals to the recovery of users. It will present findings from a literature review on the use of experiential knowledge by mental health professionals. It is part of a PhD research on the value of experiential knowledge for the recovery of users of mental health services. This review includes qualitative and quantitative studies published between 2015 and 2020. Since the 90s, peer support workers (also referred to as ‘experts by experience’ and ‘lived experience practitioners’) in several western countries around the world started using their lived experiences as part of mental health services changing their focus to recovery-oriented care. This led to the further professionalization of peer support in general. Lived experiences of service users, often connected to stories of personal recovery, illustrated how people cope with severe psychiatric conditions or addiction.1 Experiential expertise is based on a lived experience with a particular disease, disability, or other disruptive life event.2 In 1976, sociologist Borkman became the first to clarify the concepts ‘experiential knowledge’ and ‘experiential expertise. She defined experiential knowledge as “the truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others.”3 It refers to wisdom and know-how gained from a personal experience with a phenomenon, such as a disease or disability. Experiential expertise, the second concept, was defined as “a competence or skill in handling or resolving a problem through the use of one’s own experience.”3 The most important difference between both concepts is that everyone with the same problem may have experiential knowledge, but the degree to which one has integrated and is competent to share the knowledge with others varies.2 Experiential knowledge has been introduced as the ‘third’ source of knowledge, alongside academic and practice-based knowledge, stemming from intuitive knowledge focusing on the elaboration of existential and moral insights in view of practical questions and dilemmas.4

Roots can be found in the users’ and survivor movement that arose out of the civil rights movement of the late 1960s and personal histories of psychiatric abuse by

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 6 well-known activists like Judy Chamberlin in the US, Mary O’Hagan in New Zealand, and Wilma Boevink in the Netherlands. Since then, many former service users have developed into peer support workers, being employed in the field of addiction and mental health care.5 Generally, effect studies have compared the practice of peer support workers to treatment as usual and found no significant difference between peer and non-peer staff.6,7 Only one randomized control study that researched peer- supported self-management for people discharged from a mental health crisis team suggests that peer-delivered self-management reduces readmission to acute care and feelings of loneliness, and enhances social networks.8 Despite these inconclusive results, investments have been done in the promotion and uptake of peer support internationally.7 In the US, Canada, New Zealand, Australia, UK, and The Netherlands, peer support work is professionalizing fast, in terms of education, certification, function descriptions, and professional associations.9 While peer support workers form a growing part of the work force, there are still issues around the broader implementation and innovation. A number of these issues is related to the status in the organization concerning roles, responsibilities, and payment.10 Other issues are related to an institutional culture, which, in most cases, is still dominated by the medical model.11,12 The most recent development is that professionals from the traditional disciplines, like nurses, social workers, psychologists, and psychiatrists, also bring to the surface their personal lived experience, which so far had been hidden, because of professional standards precluding its use.13 However, all helping professions, from psychotherapy to social work, are known to attract individuals with a history of psychological troubles in general.14,15 Research reveals that a considerable number of professionals in mental health care has been exposed to traumatic and disruptive experiences in their lives. Estimations fluctuate between 45% and 75%.1,16 Being aware of one’s vulnerabilities is basic to the training of psychoanalysts, the Rogerian tradition, and other humanistic approaches.17 To ’know oneself’ was, in fact, crucial in a number of psychotherapeutic traditions.18 Although clinicians have been encouraged to process their issues as part of their personal-professional development, the use of personal lived experiences in mental health care practice, so far, has been limited. Whereas the introduction of peer support workers in mental health services contributed to the transformation in the direction of a recovery-oriented landscape in general, it also consequently led to a division between professionals. Traditional professionals felt unseen and disadvantaged.19 Weerman et al. explain how working alongside a peer support worker eventually facilitated the coming out of mental health professionals in The Netherlands.19 This led to further acknowledgement of the worth of lived experience in mental health settings. Yet, many other professionals felt urged to keep their personal experiences at bay.20 To date, there is very little scientific evidence on the professional use of this type of knowledge in mental health care. Therefore, this review explores the international context on the use of experiential knowledge by professionals in mental health settings and searches for possible contributions to the recovery of service users.

Methods

A literature review was conducted including qualitative and quantitative studies from 2015 to 2019, consulting the following databases: PsycINFO, PubMed, and

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 7

Cochrane Library. The research question highlighted what the added value and impact of experiential knowledge of professionals for mental health services is, which led to a further operationalization and a refined search string combining the following terms: mental health personnel, psychiatric nurses, social workers, psychiatrists, (psycho)therapists, counsellors, psychologists, practitioners and self-disclosure, posttraumatic growth and/or lived experiences and/or wounded healer and/or experiential knowledge and/or recovered.

The literature search was conducted by the first author and two information specialists. A preliminary check with three different search strings resulted in more than 3,000 publications. Duplicates were excluded. By using a ‘near operators’ search strategy* this number was reduced to 2,851 articles in the aforementioned databases. A set of inclusion and exclusion criteria was used to ensure that the publications selected captured the research question. The focus of the literature study was on journal articles published in English-language, peer-reviewed journals. The articles had to be available online, identifiable through an electronic database, and published between January 2015 and June 2019, focusing on recent developments. The end date was the time when the search commenced. Books, book chapters, published reports, theses, editorials, letters to the editor, commentaries, news or magazine articles, and grey literature (e.g., unpublished reports) were excluded. The articles included are research and empirical findings, systematic reviews, scoping reviews, critical interpretive reviews, and narrative reviews. All potentially relevant articles were screened upon title and abstract. The publications varied considerably in size, scope, and profundity. Articles from professional areas other than mental health (e.g., somatic care) were excluded, as well as publications focusing on children/youth care. Furthermore, articles that focused on ethnic and/or religious perspectives were also excluded. A second screening upon relevance resulted in 37 relevant articles. Articles describing contributions of non-traditional mental health professionals exclusively, such as those of peer support workers, were excluded. Close reading of the 20 remaining articles upon relevance concerning the actual use of experiential knowledge amongst traditional professionals reduced the number of included articles to 15 publications.

* Proximity operators yield more precise search results.

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 8

Figure 1. Flow chart

Records identified

in August 2019 Exclusion of duplicates: search, via N= 271 PsycINFO: N=

1,556

PubMed: N= 1,440

Identification Cochrane N= 126

Exclusion of: - Book(chapter)s, reports, theses, editorials, letters to the editor, commentaries, news or First screening magazine articles, and grey literature with proximity - Settings other than mental health operator strategies - Children/youth care (N5 and W8): - Reporting ethnic or religious perspectives N= 2,851 - Peer support articles Screening N= 2,814

Full text articles assessed for Records excluded

eligibility: after close reading: N= 37 N= 20

Eligibility

Studies included: N= 15

Inclusion

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 9

Results The 15 selected articles were published in a broad range of mental health and psychology journals. Most of the studies involved qualitative research, using different methods like grounded theory, discourse analysis, auto-ethnography, narrative analysis, and a consensual analysis. Five studies were found using a quantitative design. Characteristics of the included publications are listed at the end of the article. We describe findings related to the use of experiential knowledge by traditional professionals and possible contributions to the recovery of service users. In the selected articles a varying conceptualization of experiential knowledge is identified, differing from use of personal knowledge in traditional psychotherapeutic contexts to recovery-oriented practices. These conceptual differences partly depend on the paradigm, either being medical-clinical or recovery-oriented.

Findings

A scarce body of literature reports about the use of experiential knowledge by mental health professionals. Mainly professionals practising applied professions, e.g., social workers and nurses, are increasingly speaking out about their own experiences of using mental health services.21 Some studies report that traditional professionals became inspired after working alongside peer support workers.22,23 Byrne, Happell & Reid-Searl state that mental health nurses tend to enjoy closer relationships with consumers than other professionals.24 We differentiate the use of experiential expertise affecting the personal-professional identity, system-related changes, and the recovery of service users.

Personal-professional transformation

Professionals who started using their experiential knowledge believe that their service user experiences enhance their current work, such as an adequate use of self-disclosure, increased emotional empathy and insight, and the ability to hold hope for service users.21 Levitt et al. and De Vos et al. both point out that therapists with lived experiences use disclosures in a more relational and responsive manner by demonstrating humanity and sincere care for service users.25,26 Some professionals undergo training to be able to use their lived experiences as actual experiential knowledge. Training and supervision is considered particularly helpful to reflect on the interaction between experiential knowledge and the profession, since conflicts in values, attitudes, and actions pose a challenge at the meeting point between the service user and professional part within one individual.27 Oates et al. describe how crossing the boundary between the professional and the service user was at first seen as a taboo, and possible reoccurring self-stigma should be addressed.22,23 Goldberg et al. identified the transformation process ‘from patient to therapatient’ (here, clinical social workers) in Israel.27 This process included four stages starting with an initial exploration of themselves as potential help providers and not merely as receivers, questioning the possibility of a service user being a therapist, feeling incompetent to identifying their ability to be professional, and finally integrating service user and therapist parts in one identity. Richards et al. describe how professionals face dilemmas in integrating both identities, depending on the discursive resources most salient in relation to the contexts.21 Goldberg et al. argue that, by making professionals familiar and comfortable with a hybrid identity, they

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 10 make extensive use of their lived experience in ways that contribute to service users.27 New identity constructions incorporate positive identities of “wounded healer,” “personhood,” and “insider activist,” in which mental distress is normalized as human experience, and recovery is “of life” rather than from illness. In this way, professional and service user identities can complement one another and enable empathy with and access by other service users, as well as fulfilling a destigmatizing role within mental health services.21 Levitt et al. also stress that using one’s own experiences might also be influenced by personality styles and work preferences.25 Lebel et al. refer to Riessman’s introduced Helper Therapy Principle in 1965, which suggests that when an individual (the “helper”) provides assistance to another person, the helper may benefit himself.28 Giving help can be reintegrative for the professional himself.

Contributions to the system

Research illustrates the mental health system in mainly the western countries (Australia, UK, USA, The Netherlands, and Israel) is struggling to meaningfully incorporate the lived experiences of professionals.21,24 Even though traditional professionals with lived experiences might want to open up, this is not a common practice. Professionals with lived experiences who work in an environment where the served population has been stigmatized may want to fulfil a role as social change- maker, albeit often without the consent of academic colleagues. Clinicians and therapists seem most reserved in this development since academic socialization holds expectations to keep own needs, aspirations, and weaknesses out of the clinical practice.23 They are trained to be self-effacing.23 While the concepts of ‘professional self-disclosure’ and ‘wounded healer’ are familiar for psychotherapists and host meaningful principles to strengthen the therapeutic alliance, there is a threat that the focus of therapy will shift from user to therapist.25,29,30,31 The risk to be portrayed as an impaired professional and the negative connotation thereof have hindered these practitioners.32 Oates et al. address the taboo of disclosure and debate the extent to which personal and professional boundaries are negotiated during clinical encounters.22 It takes effort and self-reflection to critically bring these taboo and power differentials to the foreground.23 The introduced new hybrids and ambivalences are considered undesirable or even dangerous because they threaten the status quo and the apparent logic of the system.23 This can lead to significant risks to the mental health and well-being of the concerned activists. Byrne et al. state that mental health professionals in general tend to have pessimistic views about the capacity of people diagnosed with mental illness to recover, so supportive colleagues may not be available.24 The risk of being encapsulated or being ignored in the system seems realistic, leading to both internal and external conflicts. Others warn for the appearance of a new and separate group, since professionals with lived experiences might present different and superior than peer support workers and other professionals.21 Self‐care techniques seem important mediators against these identified risks.24 Other possible beneficial factors in this regard include therapist self- insight, adequate training and guidance, and a safe work environment.26

Contribution to recovery of users

Few scientific studies report about the actual contribution to the recovery of service users. Whereas therapeutic disclosures are pursued to evoke favourable changes in

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 11 clinical symptoms, there are few insights on the use of experiential knowledge and outcomes in broader terms of recovery and quality of life. 25,31,33,34 Some professionals use their experiential knowledge for specific therapeutic purposes, such as providing new insights into the recovery process, modelling, and enhancing hope.30,26 De Vos et al. argue that users with eating disorders benefit from being treated by a recovered therapist.26 The most important changes reported were feeling recognized and heard, diminished levels of shame, increased feelings of hope, increased sense of trust, more openness/honesty, and a stronger motivation to change.26 Another study shows how the lived experience instantly increased empathy and deepened the understanding of anxiety, low mood, or suicidal thoughts.22 When recovered from certain distress, these experiences enable the professional to see openings of recovery for others.26 Identification, as an underlying dynamic, is associated with increased commonality and helps to normalize mental distress.21

Conclusion We found a scarce body of literature from research in western countries concerning the use and value of experiential knowledge by traditional mental health professionals. Nurses and social workers especially are speaking out about their own experiences with mental health distress, and some became inspired by working alongside peer support workers or lived experience practitioners, which facilitated coming outs about hidden personal histories with mental health distress.21,22,23 The use of experiential expertise affects the personal-professional identity, the mental health care system, and the recovery of service users.

Firstly, professionals who use experiential knowledge want to enhance their practice with adequate self-disclosure, more empathy and insight, and the ability to hold hope for service users. Experiential knowledge is used in a relational and responsive manner, and the decision to use personal experiences might be related to personality styles.25,26 Several authors describe the transformative process professionals undergo in order to integrate the professional and personal identity into a new identity construction, in which professional and service user identities can complement one another and mental distress is normalized as human experience. 21,22,27 Giving help can also be beneficial for professionals themselves.28

Secondly, research illustrates the mental health system is struggling to meaningfully incorporate lived experiences of professionals.21,24 The use of experiential knowledge by traditional professionals is not a common practice. Clinicians and therapists seem most reserved in this development. Even while historically academic professionals developed interesting concepts such as ‘the wounded healer’ and ‘therapeutic self- disclosure,’ using personal experiences for professional purposes remained controversial, putting emphasis on the therapist’s possible vulnerability. It takes effort and self-reflection to critically bring these taboo and power differentials to the foreground, affecting the well-being of the concerned activists. Self‐care techniques seem important mediators besides self-insight, adequate training and guidance, and a safe work environment.24,26

Lastly, few scientific studies report how experiential expertise might affect recovery of service users and quality of life in broader terms. Some studies indicate positive

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 12 findings, such as providing new insights into the recovery process, feeling recognized and heard, diminished levels of shame, increased feelings of hope, increased sense of trust, more openness/honesty, and a stronger motivation to change.26 The lived experience may increase empathy and deepen understanding of anxiety, low mood, or suicidal thoughts.22

The limited number of articles found indicates a lack of scientific knowledge about professionals working with their experiential knowledge and its meaning for the recovery of service users. This is not surprising, since the notion of the value of lived experiences and its use in recovery-based mental health services is still in its early stages of development. More research is desirable. Therefore, the empirical part of the first author’s PhD research focuses on the lived experiences and experiential knowledge of traditional mental health professionals and its possible meaning for the recovery of service users.

Limitations Because of the limited number of studies, evidence about possible contributions of the use of experiential knowledge for the recovery of service users is still scarce. Most of the included articles concerned qualitative studies with limited sample sizes. Also, some articles were written from a specific area, like eating disorders or psychotherapy. Furthermore, two articles that were selected for the review came from one PhD study, which may have limited its scope.

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Table 1. List of selected publications

Authors Title Journal Year Sample Site Objectives Findings of publication Berg, H., ‘Sincerely Nordic 2017 A qualitative Norway Study on the Therapists understood self-disclosures as a Antonsen, speaking: Why do psychology hermeneutic rationale of self- way of normalizing experiences, humanizing P., & psychotherapists phenomenological disclosure of the therapeutic interaction and underlining the Binder, P.- self-disclose in study (n=10 therapists importance of emotional self-acceptance. E. therapy? A therapists) However, self-disclosures were considered qualitative insignificant or potentially harmful if they hermeneutic resulted in a change of focus from therapist to phenomenologica service user. l study’ Byrne, L., ‘Recovery as a Issues in 2015 Grounded theory Australia To explore the The findings suggest that lived experience Happell, lived experience Mental study amongst 13 existing and practitioners experienced significant barriers to B., & Reid- discipline: A Health lived experience potential role for the implementation of recovery-focused Searl, K. grounded theory Nursing practitioners (LEP) lived experience practice with three main issues: 1) Recovery study’ in Australia practitioners in the co-opted, 2) Recovery uptake, and 3) ongoing Recovery denial. Lived experience implementation of practitioners are the logical leaders of recovery recovery principles implementation due to their own internal within the mental experience and understandings of recovery but health sector must be enabled to take on their role as recovery experts and leaders. Byrne, L., ‘Risky business: Internation 2017 Grounded theory Australia To generate a Participants described the unique Happell, Lived experience al Journal study amongst 13 theory to explain vulnerabilities of their mental health challenges B., & Reid‐ mental health of Mental LEP in Australia experiences of LEP being known, and while there were many Searl, K. practice, nurses Health in the positives about disclosing, there was also as potential allies’ Nursing implementation and apprehension about personal information being development of their so publicly known. Self‐care techniques were roles important mediators against these identified risks. The success of lived experience roles requires support and nurses can play an important role, given the size of the nursing workforce in mental health, the close relationships nurses enjoy with consumers, and the contribution they have made to the development of lived experience roles within academia.

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De Vos, J. ‘Recovered Eating 2016 Qualitative cross- The To examine Results showed that to be effective experiential A., Netten, eating disorder Disorders: sectional design Netherlan recovered eating knowledge and self-disclosure need to be C., & therapists using The incl. questionnaire ds disorder therapists shared thoughtfully and should not include Noordenbo their experiential Journal of amongst 205 using their specific details about ED symptoms. Other s, G. knowledge in Treatment users and 24 experiential factors noted that enhanced the benefits of therapy: A & practitioners with knowledge and how experiential knowledge included therapist self- qualitative Prevention lived experience this influences insight and self-care, adequate training and examination of therapy and the guidance, and a safe work environment. the therapists’ service users they Service users stated that being treated by a and the patients’ treat recovered therapist had a positive effect on view’ their recovery process. Goldberg, ‘From patient to Qualitative 2015 Qualitative Israel To explore the Findings reveal the developmental process M. Hadas- therapatient: Health narrative analysis experiences of students underwent from being patients to Lidor, N. & Social work Research (n=12) social work students being 'therapatients'. This process included Karnieli- students coping SAGE with psychiatric four stages: 1) exploration of the health care Miller, O. with mental difficulties and their world, 2) questioning the possibility of a service illness’ challenges as they user being a therapist and feeling incompetent, went through the 3) identifying their ability to be professionals, different stages of and 4) integrating between their user and development as therapist parts. health care professionals LeBel, T. ‘Helping others Criminal 2015 Quantitative U.K. This study was Findings support the notion that the wounded P., Richie, as a response to Justice and survey (n= 258) designed to assess healer or professional-ex role is related to M., & reconcile a Behavior formerly the professional-ex desistance and can potentially transform Maruna, S. criminal past: The incarcerated or wounded healer formerly incarcerated persons from being part role of the persons role of formerly of “the problem” into part of “the solution” to wounded healer completed a incarcerated reduce crime and recidivism. in prisoner survey; 229 users persons by reentry programs’ and 29 staff examining potential members) differences between staff members and users in prisoner reentry programs

Levitt, H. ‘How therapist Counsellin 2016 Naturalistic study U.S.A. To examine types Findings indicated that the number of M., self-disclosure g of 52 therapy and functions of disclosures not significantly correlated with Minami, T., relates to alliance dyads therapists’ self- outcome or alliance scores, but disclosures

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Greenspan and outcomes: A psychology (n=16 therapists disclosure in relation that acted to humanize the therapist were , S. B., naturalistic study’ quarterly and 52 users) to therapy alliance associated with fewer clinical symptoms post- Puckett, J. quantitative and outcomes session than disclosures expressing A., analysis appreciation or encouragement. Also, Henretty, J. disclosures that conveyed similarity between R., Reich, the therapist and service user were associated C. M., & with fewer post-session clinical symptoms and Berman, J. interpersonal problems when compared to S. disclosures that conveyed neither similarity nor dissimilarity. As well, neutral therapist self- disclosures were associated with better service user functioning than disclosures that relayed negative or positive information about the therapist. McCormic, ‘The 'me too' Journal of 2019 Quantitative U.S.A. To test the This study provides empirical data regarding R. W., decision: An Clinical Vignette study hypothesis that the effect of the extent, rather than the mere Pomerantz, analog study of Psychology (n= 104) service user presence or absence, of therapist self‐ A. M., Ro, therapist self‐ perceptions of disclosure regarding personal psychological E., & disclosure of therapists are most experiences. Segrist, D. psychological favourable when The moderately extensive self‐disclosure J. problems’ therapists self‐ condition yielded the highest overall therapist disclose their own perception. personal experience with the same psychological problem to a moderate extent Noyce, R., ‘The experience Psychother 2018 Review U.K. To synthesize The majority of service users voiced a & Simpson, of forming a apy (meta- qualitative research preference for having similar personal J. therapeutic research ethnographic exploring users’ characteristics to their therapist, believing that relationship from study of 13 perspectives of this would contribute to an implicit the user’s studies) forming a understanding of their difficulties and would perspective: A therapeutic make the therapist more effective. Additionally, metasynthesis’ relationship with they preferred their therapists to disclose their therapist or information in order to facilitate the therapeutic counsellor relationship. Oates, J., 'Your Journal of 2017 Qualitative U.K. To explore the The influence of personal experience in Drey, N., & experiences were psychiatric interviews with extent and influence nursing work was threefold: 1) through overt Jones, J. your tools'. How and mental nurses with lived of mental health disclosure, 2) through the 'use of the self as a

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personal health experiences professionals' tool,' and 3) through the formation of experience of nursing (n=27) personal experience professional nursing identity. mental health of mental ill health Personal experience of mental illness in mental problems informs on clinical practice health nurses creates understanding of and mental health empathy for mental health service users, and nursing practice’ in certain circumstances, it is seen as giving mental health nurses credibility when talking to those in their care. The notion of mental ill health experience informing therapeutic contacts within mental health nursing practice should be contextualized within the broader picture of nurses using themselves and their experiences in their work. Pinto- ‘When in doubt, Journal of 2018 Consensual U.S.A. To learn from Therapist self-disclosure is a controversial Coelho, K., sit quietly: A Counseling qualitative experienced intervention because of the concern about the Hill, C. E., qualitative Psychology research therapists about the focus shifting from the service user to the Kearney, investigation of (n=13) use of successful therapist. Experienced therapists suggested M. S., experienced and unsuccessful disclosure can be very helpful but that Sarno, E. therapists’ therapeutic self- therapists should not disclose if it is not in L., Sauber, perceptions of disclosure (TSD) user’s best interest, if the therapist feels too E. S., self-disclosure’ over time vulnerable, and if the therapist’s personal Baker, S. issues are strongly involved. M., Thompson, B. J. Richards, ‘How do “mental SAGE 2016 Discourse analysis U.K. To explore how Participants constructed their identity variously, J., Holttum, health Open (n=10) mental health suggesting both “unintegrated” and “integrated” S., & professionals” professionals with identities in relation to some professional Springham, who are also or mental health contexts. Integrated identities can potentially N. have been service user be foregrounded to contribute the social value “mental health experience construct of service user and highlighting positive and service users” their identity hopeful perspectives on mental distress. construct their identities?’ Simonds, ‘Therapist self- Eating 2017 Quantitative study U.K. To model The analyses presented provide support for the L. M., & disclosure and Disorders: (n=120 women relationships contention that therapist self-disclosure, if Spokes, N. the therapeutic The with history of between different perceived as helpful, might strengthen the alliance in the Journal of eating problems) types of therapist therapeutic alliance. A strong therapeutic Treatment self-disclosure, alliance, in turn, has the potential to promote

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treatment of & therapeutic alliance, patient disclosure and reduce shame and eating problems’ Prevention service user self- eating problems. disclosure, shame, and severity of eating problems Tay, S., ‘Mental health Journal of 2018 Quantitative online U.K. To assess the Personal experiences of mental health Alcock, K., problems among clinical survey prevalence of problems among clinical psychologists seem & Scior, K. clinical psychology (n= 678 clinical personal fairly common. Stigma, concerns about psychologists: psychologists) experiences of negative consequences of disclosure, and Stigma and its mental health shame as barriers to disclosure and help- impact on problems among seeking merit further consideration. Within disclosure and clinical clinical psychology and across mental health help-seeking’ psychologists, professions more generally, there are external, perceived, unspoken beliefs that “experts” should be and self-stigma immune to human distress, which need to be among them, and challenged more openly. stigma-related concerns relating to disclosure and help- seeking Von Peter, ‘'I-as-We' - Internation 2018 Auto-ethnography Germany To explore some of Mental health professionals often revert to an S., & Powerful al journal of the reasons for why "I-as-we", speaking of themselves as a Schulz, G. boundaries within mental self-disclosure is so collective and thereby reifying the boundaries the field of mental health difficult and how between 'vulnerable users' and 'invulnerable health nursing these difficulties professionals.' Ethnographic examples are coproduction’ may prevent given of how these boundaries are produced productive forms of by a continuous, often invisible, and powerful coproduction category work. It is discussed how the dichotomous logic of these boundaries can cause people on both sides to feel reduced to a representation of a certain species, which can take on an existential dimension. Ways out are identified for mental health professionals to self-reflexively engage with their own crisis experience in co-productive and other relationships.

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References 1. Weerman, A., Ervaringsdeskundige zorg- en dienstverleners. Stigma, verslaving & existentiële transformatie. Vrije Universiteit Amsterdam, 2016. https://research.vu.nl/ws/portalfiles/portal/42162914/complete+dissertation.pdf 2. Castro, E.M.,et al., Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis. Soc Theory Heal, 2019.17(3):p. 307–330. https://doi.org/10.1057/s41285- 018-0081-6 3. Borkman, T., Experiential knowledge: A analysis of self-help groups. Soc Serv Rev, 1976. 50(3):p. 445–456. https://doi.org/10.1086/643401 4. Boevink, W., Lijfsbehoud, levenskunst en lessen om van te leren. Trimbos Instituut, 2009. https://www.lister.nl/wp-content/uploads/2017/04/T030-HEE_DEF-HR_mrt-2017_LR.pdf 5. Doukas, N., and D. Cullen, Recovered addicts working in the addiction field: Pitfalls to substance abuse relapse. Drugs Educ Prev Policy, 2010. 17:p. 216–231. https://doi.org/10.3109/09687630802378864 6. Chien, W.T., et al., Peer support for people with schizophrenia or other serious mental illness. Cochrane Database Syst Rev, 2019. (4). http://dx.doi.org/10.1002/14651858.CD010880.pub2 7. Lloyd-Evans, B., et al., A systematic review and meta-analysis of randomised controlled trials of peer support for people with severe mental illness. BMC Psychiatry, 2014. 14(39). https://doi.org/10.1186/1471-244X-14-39 8. Johnson, S., et al. Peer-supported self-management for people discharged from a mental health crisis team: A randomised controlled trial. Lancet, 2018. 392(10145):p. 409–418. http://dx.doi.org/10.1016/S0140-6736(18)31470-3 9. Stratford, A.C., et al., The growth of peer support: An international charter. J Ment Heal, 2019. 28(6):p. 627–632. http://dx.doi.org/10.1080/09638237.2017.1340593 10. Moran, G., et al., Challenges experienced by paid peer providers in mental health recovery: A qualitative study. Community Ment Heal J, 2013. 49:p. 281 – 291. htttps://doi.org/10.1007/s10597-012-9541-y 11. Faulkner, A., Survivor research and mad studies: The role and value of experiential knowledge in mental health research. Disabil Soc, 2017. 32(4):p. 500–520. http://dx.doi.org/10.1080/09687599.2017.1302320 12. Kemp, V., and A.R. Henderson, Challenges faced by mental health peer support workers: Peer support from the peer supporters point of view. Psychiatr Rehabil J, 2012. 35(4):p. 337–340. https://doi.org/10.2975/35.4.2012.337.340 13. Banks, S., Ethics and values in social work. Palgrave Macmillan, 2012. 14. Reid, J., and J. Poole, Mad students in the social work classroom? Notes from the beginnings of an inquiry. J Progress Hum Serv, 2013. 24(3):p. 209–222. https://doi.org/10.1080/10428232.2013.835185 15. Tay, S., Alcock, K., and K. Scior, Mental health problems among clinical psychologists: Stigma and its impact on disclosure and help‐seeking. J Clin Psychol, 2018. 74(9):p. 1545–1555. https://doi.org/10.1002/jclp.22614 16. Zerubavel, N., and M.O.D. Wright, The dilemma of the wounded healer. Psychotherapy, 2012. 49(4):p. 482–491. https://doi.org/10.1037/a0027824 17. Ziv-Beiman, S., and G. Shahar, Therapeutic self-disclosure in integrative psychotherapy: When is this a clinical error? Psychotherapy, 2016. 53(3):p. 273–277. https://doi/org/10.1037/pst0000077 18. Amundson, J.K., and M.W. Ross, The wounded healer: From the other side of the couch. Am J Clin Hypn, 2016. 59(1):p. 114–121. https://doi.org/10.1080/00029157.2016.1163657 19. Weerman, A., et al., Professioneel inzetten van ervaringsdeskundigheid. Boom uitgevers, 2019. 20. Weerman, A., and T. Abma, Social work students learning to use their experiential knowledge of recovery. An existential and emancipatory perspective. Soc Work Educ, 2018. 38(4):p. 453– 469. https://doi.org/10.1080/02615479.2018.1538335 21. Richards, J., Holttum, S.,and N. Springham, How do “mental health professionals” who are also or have been “mental health service users” construct their identities? SAGE Open, 2016. 6(1). https://doi.org/10.1177/2158244015621348 22. Oates, J., Drey, N., and J. Jones. “Your experiences were your tools”. How personal experience of mental health problems informs mental health nursing practice. J Psychiatr Ment Health Nurs, 2017. 24(7):p. 471–479. https://doi/org/10.1111/jpm.12376 23. Peter, S., and G. Schulz, ‘I-as-we’ – powerful boundaries within the field of mental health

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 19

coproduction. Int J Ment Health Nurs, 2018. 27(4):p. 1292–1300. https:/doi/org/10.1111/inm.12469 24. Byrne, L., Happell, B., and K. Reid‐Searl, Risky business: Lived experience mental health practice, nurses as potential allies. Int J Ment Health Nurs, 2017. 26(3):p. 285–292. https://doi.org/10.1111/inm.12245 25. Levitt, H.M., et al., How therapist self-disclosure relates to alliance and outcomes: A naturalistic study. Couns Psychol Q, 2016. 29(1):p. 7–28. https://doi.org/10.1080/09515070.2015.1090396 26. Vos, J.A., Netten, C., and G. Noordenbos. Recovered eating disorder therapists using their experiential knowledge in therapy: A qualitative examination of the therapists and the patients view. Eat Disord J Treat Prev, 2016. 24(3):p. 207–223. https://doi.org/10.1080/10640266.2015.1090869 27. Goldberg, M., Hadas-Lidor, N., and O. Karnieli-Miller, From patient to therapatient: Social work students coping with mental illness. Qual Health Res, 2015. 25(7):p. 887–898. https://doi.org/10.1177/1049732314553990 28. Lebel, T.P., Richie, M., and S. Maruna, Helping others as a response to reconcile a criminal past: The role of the wounded healer in prisoner reentry programs. Crim Justice Behav, 2015. 42(1):p. 108–120. https://doi.org/10.1177/0093854814550029 29. Simonds, L.M., and N. Spokes, Therapist self-disclosure and the therapeutic alliance in the treatment of eating problems. Eat Disord J Treat Prev, 2017. 25(2):p. 151–164. https://doi.org/10.1080/10640266.2016.1269557 30. Berg, H., Antonsen, P., and P.E. Binder, Sincerely speaking: Why do psychotherapists self- disclose in therapy?–A qualitative hermeneutic phenomenological study. Nord Psychol, 2017. 69(3):p. 143–159. http://dx.doi.org/10.1080/19012276.2016.1198272 31. Pinto-Coelho, K.G., et al., When in doubt, sit quietly: A qualitative investigation of experienced therapists’ perceptions of self-disclosure. J Couns Psychol, 2018. 65(4):p. 440–452. https://doi.org/10.1037/cou0000288 32. Tay, S., Alcock, K., and K. Scior, Mental health problems among clinical psychologists: Stigma and its impact on disclosure and help seeking. J Clin Psychol, 2018. 74(9):p. 1545–1555. 33. Noyce, R., and J. Simpson, The experience of forming a therapeutic relationship from the client’s perspective: A metasynthesis. Psychother Res, 2018. 28(2):p. 281–296. https://doi.org/10.1080/10503307.2016.1208373 34. McCormic, R.W., et al., The “me too” decision: An analog study of therapist self‐disclosure of psychological problems. J Clin Psychol, 2019. 75(4):p. 794–800. https://doi.org/10.1002/jclp.22736

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Narrow Normality or Inadequate Services? Supporting Citizenship for Young Adults in Challenging Situations Semb, Randi1 Bekken, Wenche2 Borg, Marit1

1Centre for Mental Health and Substance Abuse, Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen, Norway 2OsloMet – Oslo Metropolitan University, Department of Social Work, Child Welfare and Social Policy, Oslo, Norway

This work is licensed under a Creative Commons Attribution 4.0 International License.

Keywords Community services, practitioners’ perspectives, citizenship, social recovery, young adults, co-occurring problems

Abstract

Objective: The study explores practitioners’ experiences and understandings of supporting young adults with co-occurring substance abuse and mental health problems to participate in society and to experience a sense of citizenship. Methods: The participants were nine mental health and social care practitioners in community services. Multi-stage focus group interviews and individual interviews were conducted with seven and two practitioners respectively. The interviews were transcribed verbatim and analyzed using stepwise thematic analysis. Results: The analysis resulted in four themes presented under two headings: 1) Practitioners’ perceptions and understandings of the young adults’ barriers to social inclusion were described in two of the themes: limited experiential base and unrealistic expectations. 2) Practitioners’ ways of supporting the young adults’ social inclusion were demonstrated in these two themes: negotiating normality and stepwise integration. The results emphasized the importance of practitioners’ supporting the young persons to develop coping strategies that enhance empowerment and personal growth. The paper’s results are discussed in relation to citizenship perspectives. Conclusions: We conclude that practitioners delivering health and social services may be trained to strengthen their knowledge and skills in relation to citizenship and community awareness, social conditions, and human rights.

This article has been peer reviewed.

Corresponding Author: Randi Semb. Centre for Mental Health and Substance Abuse, Faculty of Health and Social Sciences, University of South-Eastern Norway, Drammen, Norway. Email: [email protected] Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 21

Introduction

The young adult phase of life is characterized by the transition from youth to adulthood. There are different ideas about what can be understood as ‘successful’ transition, such as increased independence, moving away from home, participating in higher education and employment, and entering into intimate relationships. “Young adults” in the context of this paper refers to the age group of 18–28 years.

Young adults with co-occurring substance abuse and mental health problems (co- occurring problems) are a heterogeneous group.1, 2, 3 However, they often do not conform to the expectations and typical behaviour of their peers. This can be a consequence of having co-occurring problems, such as concentration challenges, bodily agitation, and “chaotic” thoughts. Inadequate support to cope with everyday life can have negative effects on self-esteem and social skills, which may again influence social participation.2, 4, 5 ‘Otherness’ experiences, such as friendship with people who abuse drugs, may be a part of young adults’ baggage. This may have an impact on their ideas of the social meaning of everyday life.3, 6 Many drop out of education and this can significantly influence their opportunities in the labour market and other aspects of life.7, 8 In addition, young persons with co-occurring problems may experience stigma, for example, in relation to using drugs and being outside work and education. Experiences of discrimination, such as when a teacher overlooks a student’s concentration problems, are also well-known situations. These are experiences influencing the person’s efforts to participate in communal activities.3, 5, 6

A major aim of primary health and social services in Norway is to facilitate inclusion of these young persons in social activities.1, 9 This means that practitioners have to consider how to fill the gap between individual factors (e.g., social skills, education, self-efficacy, and social identity) and environmental factors (e.g., norms and values and accessibility).1, 9 In health and social services, the emphasis is typically to change the individual factors and ‘improve’ and enable service users to adapt to societal demands and expectations.10–13 National political guidelines emphasize person-oriented support.1, 9 This implies that service users’ values, opinions, and aspirations need to be emphasized. In order to support their choices and respect their values, there is a need to challenge the demands and expectations in society. 14–17

Supporting Recovery and Citizenship

The recovery approach is having an increasing impact on mental health and substance abuse services. It emphasizes a person’s subjective experience of being in a recovery process. The focus is on self-knowledge, life knowledge, dreams, and future wishes.18 Recovery means different things to different persons. It can be understood as a dynamic interplay between personal and environmental factors.19 It is, however, possible to make a distinction between recovery as a personal process and as a social process. Understanding recovery as a personal process implies viewing recovery as taking place within the person. Understanding it as a social process recognizes the importance of contextual factors in personal networks and the broader social structure in the process.18, 20 Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 22

Recovery-oriented services aim to support citizens to live meaningful lives in a community of their choice, with or without symptoms.21 A central principle in such services is that the practitioners are not to take on an expert role, but rather to downplay their own importance and transfer power to the users by implementing egalitarian cooperation.18 It is assumed that service users are experts on their own lives and should make decisions on matters concerning their lives.

To promote social recovery and recovery-nourishing environments, practitioners need to have autonomy and relevant knowledge in order to support the persons in daily living, attend to challenges in their living conditions, and explore how different relationships in their environment can promote and hinder recovery.22 They need to be aware of human rights as well as discrimination and stigma.18 To promote opportunities for participation in accordance with ‘ordinary’ citizens’ lives, practitioners must be able to cooperate with different agents in society.23 Service standards may be inadequate to promote recovery, and especially in relation to promoting social recovery.17 Practitioners may experience powerlessness in the face of exclusionary social structures in society.8 ,14, 24, 25 They may also face competing priorities between recovery-oriented standards and management standards, for example, in terms of efficiency and limited resources. 26, 27

The recovery approach is very much aligned with international human rights standards, including those of the Convention on the Rights of Persons with Disabilities (CRPD).28, 29 The human rights perspective emphasizes social barriers that prevent people from utilizing their human potentials.30 The CRPD emphasizes expanding the scope of who should be recognized as full members of society.30, 31 According to the Convention, persons with disabilities, including mental or psychosocial disabilities, should not be excluded from society and should have the same choices as other citizens.

The concept of citizenship is an expression of membership in a society. There are different understandings of what such membership actually means and involves.32,33 One approach is normative, emphasizing that citizens must live up to certain standards in order to be considered as full members. Another approach is inclusive and seeks to expand the framework for who are considered full members.34 The development of rules and norms for recognition as a full member of society can be seen as a compromise between forces that aim for normalization and forces aiming to increase norm diversity and to acknowledge a greater variety of ways to live one’s life. This approach may be helpful for marginalized persons.32

The citizenship approach includes rights and duties in facilitating and ensuring participation. It also includes social factors that foster participation, a feeling of belonging and recognition in a community as a member through being listened to, and finding that one’s opinions, wishes, and goals can be acted upon.35–37 The citizenship approach may help practitioners to develop new standards for practice that place greater emphasis on social factors.17,32

In an inclusive citizenship perspective, all citizens should have the same opportunities to participate in ordinary, everyday community life. What prevents people with mental health and substance abuse problems from having the same choices and participating on an equal footing are often explained in terms of their Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 23 biological or moral ‘anomalies.’10, 38 This raises the question of how to recognize these anomalies as part of diversity in society.

The objective of this study is to develop knowledge of practitioners’ experiences and understandings of supporting young adults with co-occurring problems to participate in society and to experience a sense of citizenship. Practitioners working with young adults with co-occurring problems gain understanding and insights through working with them and develop ways to help them. Gaining knowledge about their experiences will help practitioners to further their journey toward social recovery.

Methods

Recruitment and Data Processing

The participants in the study were practitioners working in mental health and social care in community services in a municipality in Eastern Norway. The municipality has approximately 60,000 inhabitants. The standard of living and educational level in the municipality is relatively high in the Norwegian context.

The recruitment process involved sending a letter to four managers of health and social care units in the municipality. They were asked to invite two or three practitioners from their unit to participate. Those agreeing to participate contacted the first author. The inclusion criteria were as follows: (a) having worked in mental health and social care services for at least two years; (b) having worked with young adults (18–28 years) with co-occurring problems with regard to experiences of being an ‘outsider’; and (c) having worked toward social inclusion in terms of employment, education, or other activities.

Eight women and one man participated in the study. Their educational backgrounds included social work, nursing, teaching, and social science. Each unit consists of different departments. Some departments serve persons with substance or mental health problems, and others serve people with challenges at school and in work life independent of the cause of those challenges. The service users are of different age groups, and both clinic and outreach services are offered.

The data were generated through multi-step focus group interviews.39 The method involves holding group meetings with the same participants several times to explore and discuss relevant topics. In the present study, we had two focus group interviews involving seven participants; four practitioners participated in both interviews and three in only one. Two further participants were interviewed individually and were not present in the focus groups.

A semi-structured interview guide was adopted with open questions about the participants’ understandings and experiences of how young adult service users experience being part of the community and how practitioners supported them to feel more like insiders and less like outsiders in the community. The participants were asked to provide concrete examples of their experiences. Each of the focus group interviews lasted for approximately one and a half hours and were facilitated by the first and third authors. The first author conducted the one-hour-long individual interviews. All interviews were audio recorded and transcribed verbatim. Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 24

The study was conducted in accordance with the Norwegian National Committees for Research Ethics. Ethical approval to conduct the study was granted by the Norwegian Social Science Data Services (NSD) (project number 47154). The practitioners were assured of confidentiality by not presenting their detailed demographic data and through gender anonymization and omitting statements related to their place of work in the presentation of the findings.

Analysis

Stepwise thematic analysis of the focus group interviews was conducted.40 The first author conducted the initial step of the data analysis by reading the transcripts to become familiar with the data, noting initial thoughts and emerging themes. Subsequently, each of the transcripts was coded using NVivo qualitative data analysis software. Thereafter, detailed codes with their associated excerpts were sorted into code groups to determine the content across transcripts/participants. All text was treated as data. To reduce the text, only codes that directly addressed practitioners’ descriptions of the young adults and efforts at social inclusion were included in the analysis. The code groups were then sorted according to their content. They were classified under two main headings reflecting topics in the interview guide: 1) the practitioners’ descriptions of the young adults, and 2) the practitioners’ support work, with 54 and 126 codes respectively. The codes, with their associated excerpts, were then further sorted according to their content to identify preliminary themes under each main heading. It was a back-and-forth process between investigating the complete transcripts and the evolving themes. This resulted in five themes under the practitioners’ description of the young adults (skills gap, limited experiences, substance abuse related problems, narrow normality, maturation processes) and six themes under the practitioners’ support work (conversation as a tool, reality orientation, facilitating new experiences, finding something to connect to, getting in a position to choose and take responsibility, motivation through coping). The first author discussed the analysis process and the evolving themes with second and third authors. All authors contributed to the writing process by describing the themes and searching for overarching themes. Finally, we identified two overarching themes under each of the two main headings.

Results

The results are structured under two headings: the practitioners’ perceptions and understandings of barriers to social inclusion among young adult service users with co-occurring problems, and the practitioners’ supporting the young adults’ social inclusion.

Barriers to Social Inclusion

The practitioners described how the young adults’ recovery and social inclusion can be difficult because they have a limited experiential base and unrealistic expectations.

Limited Experiential Base The practitioners described how young persons could have limited experience of Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 25 participating in leisure activities and a history of challenging childhood. One of the practitioners said the following:

“What I often find difficult with those I meet is that . . . they’ve maybe dropped out of school and started with drugs at high-school age or before that, but I think that [the feeling of being an outsider] has begun, of course, way before that. Because they often come from low socioeconomic backgrounds and troubled homes, without being completely categorical or they’ve struggled with some challenges that haven’t been . . . I don’t know . . . met or resolved, or seen in a way. But that they’ve maybe lost something or are gradually becoming more like outsiders the whole way along from the time they were very young . . .”

The practitioners also described a growing gap between the young adults they work with and their peers/others in the same age group. One participant stated: “ There’s a period in the life of youth when a lot happens . . . complete high school, move out, attend higher education. Then, the gap, right . . . gets so . . . so very big . . .”

According to the practitioners, these young adults choose to belong to ‘outsider’ groups like substance abuse settings or internet communities, which do not support community belonging. Limited experience in mainstream environments may reduce their social and activity skills.

Unrealistic Expectations The practitioners pointed out that the young persons often mentioned easy ways of achieving success and thus solving their problems. For example, one practitioner said:

“. . . but there’s many of them that are interested in. . . .or some of them are interested in becoming computer game developers, I mean, working more on games, you know? They have sort of the idea that that’s something they can earn loads of money by doing, you see?”

The term “narrow normality” emerged in the interviews as a possible stumbling block that hindered young persons from having an active social life. The practitioners explained this as a limited understanding and experience of what being normal actually entails. The practitioners pointed out that those who are older can often see a little farther into the future. Several aspects were described:

“. . . it is often a little easier when one gets a bit older, and that insider concept [understanding of oneself], that normality concept, it can be nuanced and expanded a little. You know . . . being normal is such a strange concept. But . . . you know, being okay . . . beginning to speak about what’s required for one to be okay, what is a good life, you know, and one needs a few years, then, to be able to reflect on that and put aside what all the others think, or what you believe all the others are thinking about what a good life is . . .”

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Another participant stated: “Yes, because it’s that exactly, that . . . it’s what one believes all the others are thinking. Trying to say, ‘Sorry, but most of the others aren’t interested in you; they’re just interested in themselves’ . . . That’s the way it is . . .” The practitioners’ descriptions of narrow normality are also connected to the young adults’ lack of self-belief and a fear of the gaze of ‘the other.’

Some of the youth came from families with great expectations for their children. Such expectations were linked to a general characteristic of the municipality.

“. . . and it’s a well-known case that this municipality is a bit different based on what I’ve heard at least, from (Y) municipality [neighbouring], there’s a little more understanding that the kids can have a vocational education. And the ones that we work with often become blue-collar workers in the future. They’re practitioners.”

In summary, the practitioners in general agreed that young persons with co-occurring problems were likely to have had few or negative experiences in their early lives. They thought that this may have put them on the path toward becoming social outsiders. The practitioners described young adults who may have different experiences than those of their peers and may also have a different understanding from the practitioners.

Supporting Social Inclusion

The practitioners described both negotiating normality and stepwise integration as central to their work to support the young adults’ social inclusion and deal with barriers associated with their limited experiential base and unrealistic expectations.

Negotiating Normality To help young adults toward more realistic ideas of what was possible for them in the near future, the practitioners tried to help them gain greater insight into their own intentions and goals and avoid measuring themselves against the presumed societal ideals of success. It was difficult for the practitioners to help young persons understand that there are more than two alternatives to choose between, especially in terms of social achievements. The practitioners found it demanding to offer suggestions that young persons found meaningful.

Spending time with a variety of ‘ordinary people’ could give young adults more realistic ideas. One practitioner explained:

“. . . it’s basically about what’s important. It’s of course meeting people. A . . . like, a varied selection of people you can talk to and reflect yourself in, and you see that everything isn’t a glossy picture for all the others, and that people don’t have things . . . they don’t have their dream jobs either. But one has to earn a living. There’s something about adjusting the ideas one has about how life should look, and that being ‘normal’ is so much more than . . . than being . . . like, inheriting a law practice . . .”

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The practitioners wanted the young adults to realize that it was common not to have a dream job, and even then, possible to have a meaningful life.

The young adults with whom they worked were not always eager to agree to what was suggested. For instance, the jobs found for them might not be particularly motivating. Yet if they did participate, they could have positive social experiences:

“. . . I don’t have any who’ve come and complained that they don’t get on well at work. I mean, maybe now and then they think that some of what they’re doing is boring, but the social environment is really important. Okay. Then we begin with that . . .”

At sheltered workplaces, young persons could train to meet new people. Even though they might find the work boring, the practitioners pointed out that it was important to be able to be bored. Boredom is part of life for all of us, they stated.

The practitioners’ working context can be of great importance for how they can relate to the young adults and what support they can offer. The practitioners found that municipal services were generally numerous and comprehensive. Some young persons stated that they did not find these services useful despite needing help, partly because they did not want to use them or perhaps they felt ashamed of using them. At the same time, the practitioners underlined the lack of tailored services. One example was that the services were not necessarily structured in accordance with the young peoples’ needs and wishes. According to the practitioners, it is paradoxical that young persons who want to be normal are offered services in segregated settings. One practitioner said the following: “. . . but it’s of course a big challenge to . . . if you’re in a position where you sort of feel like an outsider . . . feel . . . feel that you’re an outsider and . . . and the lack of normality then, and then to get on the inside, when all the services are for people who are excluded in a way . . .”

Stepwise Integration Facilitating positive experiences in accordance with young adults’ interests and capabilities appeared to be a central professional strategy. One participant described a “perfect example” of this strategy as follows:

“. . . [He] really wanted to get out of it, but needed something to do then, you know? To keep sober . . . and then we have the street football team that . . . well, it was a place to start. Played a little football as a teenager and that sort of thing. And then, we expanded the activities, like managing to meet up there twice a week, keep on being sober . . . first priority . . . and then add in experience in sheltered work and a part-time job, in addition. And then, expand the ordinary job part as well . . . and cut down, in a way, the non-normal service provisions. And of course . . . it has taken a long time.”

The practitioners emphasized the need to work together on the young person’s terms. A starting point could be the young person’s own wishes and thoughts about life and the future. However, this could take time. This was particularly the case with Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 28 those described as ‘experientially limited’ and who had not grown up with a resourceful social network. According to the participants, it was no use trying to think one’s way toward the right answers. As one participant put it, “. . . It doesn’t perhaps help to sit in an office and talk with a lady and look at a list, like, because one has to actually do something. One has to try it out a bit then . . .” The practitioners clarified that being patient and not offering many ‘good’ suggestions was a guiding principle in the support that they offered:

“. . . We have to be super patient. We can’t rush it, because it’s THEY [emphasis] who should feel: ‘It’s ME who got the idea. It’s ME who thought of it. It’s ME who’s chosen it.’ There’s not some other cool person who has said: ‘Look here, this is good for you, and that’s nice for you’ and . . . I see that the most success is when the person himself actually feels ‘this is my thing.’ But . . . then we have to be good at asking questions and, of course, sketch out some alternatives, but not serve them up as though this is something good for you . . .”

As this example shows, the practitioners found that the greatest success occurred when young adults felt that they were the ones who decided and chose what should be done. Here, success was connected to the person’s motivation to get started, not to give up or get back on drugs. Moreover, young adults should make progress gradually and strive to achieve specific goals, such as getting their own apartment or a job.

The practitioners found that the young person’s substance use could make collaboration more difficult. Substance misuse affected their ability and capacity to cooperate in making changes and pursuing the goals that they had set for themselves. The practitioners found it positive to be able to offer the young people new experiences. Experiences of coping could motivate and contribute to ’getting the engine started’. However, the engine could quickly stop again, and many small steps forward could be followed by a large relapse. The practitioners pointed out that many young persons had to improve their skills and gain control of their substance use to be able to participate in activities or work.

A limited mandate and resources in the service settings restricted the practitioners from assisting the young persons in the way that they wanted or needed. They attempted to do a professional job in the best possible way within these frameworks. For example, in some cases, following up on a person at an ordinary workplace was a question of time and resources: “. . . one can see now, of course, that getting them out to a workplace and following them up there . . . because that’s where it’s happening . . . is often the most appropriate. But I must know that I have the time to do it.” The practitioners found that they had great professional freedom in their work despite these structural frameworks. If something could lead to a positive change in the service user’s life, the practitioners could support it.

In summary, the practitioners tried to relate to young adults with what they perceived as unrealistic expectations by giving them a broader picture of what a ‘normal’ life might be and what was feasible for them in the near future. The practitioners tried to organize activities so that the young persons were reality-oriented and could have Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 29 experiences of coping. A key strategy for achieving the goals was a method of small steps. This is a strategy that helps young adults to cope and improves their skills to enable them to achieve their goals in the long run. The risk of relapse is always present, especially if the young adults do not feel that what they are participating in is meaningful. The challenges the practitioners described in this context mainly concerned the young adults’ individual characteristics and behaviours. The practitioners emphasized that young adults could find inner strength and motivation through personal processes. However, it was also revealed that the challenges were about factors outside the person: activities and possibilities. Although the practitioners experienced professional freedom, they felt a need for greater institutional support in the services to facilitate activities the young adults perceived as meaningful.

Discussion

The objective of the study was to develop knowledge of practitioners’ experiences and understandings of supporting young adults with co-occurring problems to participate in society and to experience a sense of citizenship. The results of this study indicate that practitioners were geared toward supporting these young adults in alignment with their needs and wishes. The practitioners were, however, hindered by limited choices available institutionally to fully realize their goals of facilitating social inclusion in meaningful ways for the service users. We will now discuss the findings in relation to the principles and practices of social recovery and an inclusive citizenship-oriented approach.15,16,34,41

Supporting Recognition and Meaningful Activities

A core element in recovery-oriented services is to support service users to live a meaningful life in a community of their choice.18,21 However, the practitioners in this study found that the young persons could have a limited experiential base and few specific ideas about their goals in life and the kind of activities they would like to participate in. The young persons may also have unrealistic expectations and want something different from what the services could or wanted to offer.

Other studies have shown that practitioners find challenges in taking the service users’ goals and wishes as a starting point in services. They may find that the service users’ life expectations are too low or not possible to realize because of limited resources in the services.42,43 Their professional expert role and the service standards can also conflict with supporting service users to pursue their own wishes and aspirations.13,27 Especially when service users’ wishes involve continuing drug use, it can be easy to adopt a paternalistic attitude.42 Practitioners must also consider the need to protect service users from harm.43 They may also find that service users are constrained in making meaningful choices for their lives and future by structural barriers in society, especially when services cannot offer sufficient support to reduce or remove the barriers.14,25

The practitioners in our study described how they could be prevented from realizing the young adults’ wishes by a limited mandate and limited resources. However, they also reported having great professional freedom. Within the institutional framework, they exercised discretion in, for example, which of the young adults’ wishes would Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 30 probably lead to positive changes in their lives and which wishes could be realized in the near future. When practitioners felt that the wishes were inappropriate or unfeasible, they ‘negotiated normality’ with the young adults. An example of this was to encourage them to change their understanding of themselves and society in order to be motivated to participate in the activities offered. This was partly justified by statements like “boredom is part of life for all of us” and “people in general don’t have their dream job.” The young adults should, therefore, also accept activities that are unattractive at first sight. This can be seen as a failure to recognize the young adults as citizens with opinions, wishes, and goals that can be acted upon.

The citizenship literature describes dilemmas related to promoting respect and recognition for ‘otherness’ in society.44 On the one hand, perceptions suggesting that service users are not ready to be engaged as citizens of society can be viewed as an excuse for not requiring society to provide a variety of services.17,25 On the other hand, it is considered unrealistic that everyone could be granted full citizenship status without possessing certain qualifications, which are sometimes best developed in sheltered settings.44 However, health and social care practitioners have been accused of concentrating on promoting normalization by attempting to make service users conform to what practitioners perceive as the correct expectations.11,12 This indicates a need to enhance knowledge of young persons’ understandings of social inclusion and of the concept of full citizenship in the context of co-occurring problems. There is a need for empirical studies in this field.5,41

With their stepwise integration strategy and gradual approach to helping the young persons to prepare for community participation, practitioners seemed to place great emphasis on normalization, at the expense of efforts at facilitation in the community. This finding suggests that professional practice is not focused on environmental changes and facilitation. Social recovery orientation seems to be directed toward working with the individual, and not explicitly at measures, systems, and conditions that enable participation. The practitioners’ obligations seem to be oriented to changing the young adults’ understanding of themselves and adapting to the society they live in. This can be understood as an attempt to motivate young people to normalize their life situation through adherence to written and unwritten rules and norms of society. In other words, it could mean that the practitioners’ concept of normality may be the generalized normative expectations for people with mental health and substance abuse problems rather than a generalized concept of normality for everyone.

However, the practitioners expressed that they were not necessarily satisfied with this strategy. They recognized that young adults could have been offered something else, thus acknowledging their perspectives and experiences. The practitioners pointed out dilemmas related to encounters with young adults who did not want to feel like outsiders. Instead, they wanted access to the same future opportunities as their peers, which the practitioners could not offer them.

The practitioners’ narratives suggest unclear practices related to the dilemma that arose when they wanted to support the wishes of the young adults and offer activities perceived as meaningful, but which the practitioners felt were unfeasible. How practitioners deal with this dilemma will affect the degree of success regarding promotion of community belonging and citizenship. An inclusive approach to Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 31 citizenship involves recognition and respect for young people’s opinions and views. However, having recognition and respect cannot be an end in itself, as there is a need to supplement this recognition with accessible activities that are meaningful to young persons. This poses a challenge in relation to the standard activity programs in many services.

Comprehensive knowledge of local community and societal resources will make it easier for services and practitioners to find relevant providers to cooperate in providing services that are meaningful and appropriate to young adult users.10 This collaboration may also help practitioners to be reflexive about community services in general and enhance knowledge of what constitutes helpful support for young adults.5,45,46 In this study, the practitioners found that what they could offer within their specific services did not always match the young persons’ wishes and preferences. A critical question is whether the idea of narrow normality may be related to the lack of congruence between current services and young adults’ needs.12,47 The practitioners described young adults with limited understandings of what normal life may consist of and of what their local community can offer. What is regarded as normal will vary among people in general. Therefore, guiding young people on normality and adjustment is a difficult task. Moreover, who is to decide what normality is about, and for whom? Finding helpful ways to support service users requires caution and sensitivity regarding their hopes and dreams and what makes sense to the individual. On this basis, it is possible to discuss and evaluate alternative activities that can be meaningful to participate in or the inclusion of people with difficulties in existing activities. The study suggests that services and practitioners need to pay more careful attention to the community, citizenship, and social factors. The practitioners in this study revealed that the present services are not sufficiently tailored to the young adults’ needs. At the same time, they did not clearly describe this as the cause of the dilemma they faced. This suggests that guidelines emphasizing knowledge of relevant social factors are needed instead of the present individualistic procedures.

Conclusion

The practitioners found that supporting young people with co-occurring problems toward community belonging was multifaceted, challenging, and complex. One challenge revealed was that the young persons and practitioners did not necessarily share the same understanding of normality. The practitioners’ descriptions of their work were predominantly individualistic. We argue that a facilitator of citizenship and community belonging would be to strengthen community awareness, social inclusion, and human rights. The services need to be more directed toward creating a shared understanding with young persons about developing meaningful relationships in society and supporting them in developing such relationships. This requires in-depth knowledge of the social environments and cultures of the local community. One critical issue for services to become more effective in helping young adults with co- occurring problems to gain a sense of community belonging is to expand choices for paths toward full social inclusion by developing broad collaboration with relevant agencies and providers in the community.

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 32

Methodological Limitations

The practitioners in the focus group interviews knew one another to varying degrees before the study began. This may have resulted in less freedom to make uncensored statements and attempts to represent their work and their department in the best possible light. The practitioners were also employed in different units and departments and had different work experience, skills, and knowledge. They worked under different guidelines and national procedures. Such a heterogeneous group can encourage discussion and reflection and help to illuminate issues from different points of view, which was also our experience in this study.48

In this analysis, we emphasized identifying general trends and common threads rather than an extensive list of meanings. Therefore, one can view the findings of the study as simplifications of more nuanced understandings. Nevertheless, it seems that the practitioners tried to arrive at shared experiences and opinions across departments. Our opinion is that the negotiated shared themes illustrate aspects of themes that resonate with general understandings within the services.

Since group dynamics are considered to be essential for controlling the content of dialogues, the two individual interviews were used only in the last part of the analysis if they could illuminate central issues that were raised in the focus group interviews.39

The use of an inclusive citizenship perspective to critically discuss the results without weighing different considerations and legal issues may have constrained an exploration of the width and depth of the issues emphasized by the practitioners.

Compliance with Ethical Standards

The authors declare no conflicts of interest.

All procedures performed in the study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent was obtained from all individual participants included in the study.

References

1. Nasjonal faglig retningslinje for utredning, behandling og oppfølging av personer med samtidig ruslidelse og psykisk lidelse - ROP-lidelser. Helsedirektoratet, 2012. p. 129. 2. Morisano, D., Babor, T.F., and K.A. Robaina, Co-occurrence of substance disorders with other psychiatric disorders: Implications for treatment services. Nordic Studies on Alcohol and Drugs, 2014. 31(1): p. 5-25. https://doi.org/10.2478/nsad-2014-0002 3. Thommesen, H., Hverdagsliv, selvforståelse og dobbeltdiagnose. 2008. 4. Høj Anvik, C., and R. Holmen Waldahl, Når noen må ta regien: Om unge med psykisk helseproblemer: Utfordringer, tiltak og samhandling på Island, Færøyene og i Norge. 2016, 1. 5. Lo, C., Olsen, T., and C.H. Anvik, Mellom linjene? En kunnskapsstatus om ungdom med sammensatte behov for offentlige velferdstjenester. 2016. 1011. Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 33

6. Thommesen, H., Master narratives and narratives as told by people with mental health and drug problems. Journal of Comparative Social Work, 2010. 1: p. 1–16. https://doi.org/10.31265/jcsw.v5i1.50 7. Hammer, T., and C. Hyggen, Lost in transition? Substance abuse and risk of labour market exclusion from youth to adulthood. Norsk Epidemiologi, 2010. 20(1): p. 93-100. https://doi.org/10.5324/nje.v20i1.1299 8. Mitchell, D.P., Betts, A., and M. Epling, Youth employment, mental health and substance misuse: A challenge to mental health services. Journal of Psychiatric and Mental Health Nursing, 2002. 63(9): p. 191–198. https://doi.org/10.1046/j.1365-2850.2002.00466.x 9. Sammen om mestring. Helsedirektoratet, 2014. (2076): p. 148. 10. Beresford, P., All our welfare: Towards participatory social policy. The Policy Press, 2016. https://doi.org/10.2307/j.ctt1t88xgj 11. Fossestøl, B., Metode og praktisk kunnskap, in humanistiske forskningstilnærminger til profesjonspraksis. C.T. Halås, K. Steinsvik, and I.G. Kymre, Editors. 2018, Oslo: Gyldendal. p. 53- 68. 12. Järvinen, M., and N. Mik-Meyer, At Skabe en Klient. 2003, Hans Reitzels Forlag: København. 13. Perkins, R., and M. Slade, Recovery in England: Transforming statutory services? International Review of Psychiatry, 2012. 24(1): p. 29-39. https://doi.org/10.3109/09540261.2011.645025 14. Clayton, A., et al., Structural barriers to citizenship: A mental health provider perspective. Community Mental Health Journal, 2020. 56: p. 32–41. https://doi.org/10.1007/s10597-019-00490- w 15. Hamer, H.P., Rowe, M., and C.A. Seymour, The right thing to do: Fostering social inclusion for mental health service users through acts of citizenship. International Journal of Mental Health Nursing, 2019. 28(1): p. 297-305. https://doi.org/10.1111/inm.12533 16. Ponce, A.N., and M. Rowe, Citizenship and community mental health care. American Journal of Community Psychology, 2018. p. 22-31. https://doi.org/10.1002/ajcp.12218 17. Rowe, M., and L. Davidson, Recovering citizenship. Israel Journal of Psychiatry and Related Sciences, 2016. 53(1): p. 14–21. 18. Karlsson, B., and M. Borg, Recovery – Tradisjoner, fornyelser og praksiser. 2017, Oslo. 19. Rhys Price-Robertson, R., Obradovic, A., and B. Morgan, Relational recovery: Beyond individualism in the recovery approach. Advances in Mental Health, 2017. 15(2): p. 108-120. https://doi.org/10.1080/18387357.2016.1243014 20. Le Boutillier, C., et al., What does recovery mean in practice? A qualitative analysis of international recovery-oriented practice guidance. Psychiatric Services, 2011. 6(12): p. 1470– 1476. https://doi.org/10.1176/appi.ps.001312011 21. Shepherd, G., Boardman, J., and M. Slade, Making recovery a reality. 2008, London. 22. Glover, H., Recovery based service delivery: Are we ready to transform the works into a paradigm shift? Australian e-Journal for the Advancement of Mental Health, 2005. 4(3): p. 1–4. https://doi.org/10.5172/jamh.4.3.179 23. Roberts, G., and J. Boardman, Becoming a recovery-oriented practitioner. Advances in Psychiatric Treatment, 2014. 20: p. 37–47. https://doi.org/10.1192/apt.bp.112.010652 24. Clifton, A., et al., Coproducing social inclusion: The structure/agency conundrum. Journal of Psychiatric and Mental Health Nursing, 2013. 20(6). p. 514-524. https://doi.org/10.1111/j.1365- 2850.2012.01953.x 25. Ponce, A.N., et al., Social and clinical dimensions of citizenship from the mental health-care provider perspective. Psychiatric Rehabilitation Journal, 2016. 39(2): p. 161-166. https://doi.org/10.1037/prj0000194 26. Beresford, P., et al., Supporting people: Towards a person-centred approach. The Policy Press, 2011. https://doi.org/10.2307/j.ctt1t89j30 27. Le Boutillier, C., et al., Competing priorities: Staff perspectives on supporting recovery. Administration and Policy in Mental Health, 2014. 42: p. 429–438. https://doi.org/10.1007/s10488- 014-0585-X 28. The UN convention on the rights of persons with disabilities. 2008, Geneva: United Nations. https://doi.org/10.1515/9783110208856.203 Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 34

29. Recovery practices for mental health and well-being. WHO quality rights specialized training. course guide. 2019, Geneva: World Health Organization. 30. Skarstad, K., Human rights through the lens of disability. Netherlands Quarterly of Human Rights, 2018. 36(1): p. 24-42. https://doi.org/10.1177/0924051917753251 31. Lid, I.M., Forestillinger om medborgerskap i lys av kjønn og funksjonsevne. Tidsskrift for Kjønnsforskning, 2017. 3: p. 187–202. https://doi.org/10.18261/issn.1891-1781-2017-03-03 32. Rowe, M. and J.F. Pelletier, Citizenship: A response to the marginalization of people with mental illnesses. Journal of Forensic Psychology Practice, 2012. 12(4): p. 366- 381. https://doi.org/10.1080/15228932.2012.697423 33. Yuval-Davis, N., The politics of belonging: Intersectional contestations. 2011, London: Sage. https://doi.org/10.4135/9781446251041 34. Lister, R., Inclusive citizenship: Realizing the potential. Citizenship Studies, 2007. 11: p. 49–61. 35. Benedicto, J., and M. L. Morán, Becoming a citizen – Analysing the social representations of citizenship in youth. European Societies, 2007. 9(4): p. 601–622. https://doi.org/10.1080/14616690701314085 36. Lister, R., Acquiring responsibilities and citizenship: Social participation and social responsibilities. 2001, Milan: Family Forms and the Young Generation in Europe. p. 20-22. 37. Wood, B.E., and R. Black, Spatial, relational and affective understandings of citizenship and belonging for young people today: Towards a new conceptual framework, in Interrogating Belonging among Young People in Schooling, C. Halse, Editor. 2018, Basingstoke: Palgrave Macmillan. p. 165-185. https://doi.org/10.1007/978-3-319-75217-4_8 38. Henden, E., Melberg, H.O., and O.J. Røgeberg, Addiction: Choice or compulsion? Frontiers in Psychiatry, 2013. 4: p. 1–11. https://doi.org/10.3389/fpsyt.2013.00077 39. Hummelvoll, J. K., The multistage focus group interview – A relevant and fruitful method in action research based on a co-operative inquiry perspective. Norsk Tidsskrift Sykepleieforskning, 2008. 10: p. 3–14. 40. Braun, V. and V. Clarke, Using thematic analysis in psychology. Qualitative Research in Psychology, 2006. 3(2): p. 77–101. https://doi.org/10.1191/1478088706qp063oa 41. Hamer, H.P., Finlayson, M., and H. Warren, Insiders or outsiders? Mental health service users’ journeys towards full citizenship. International Journal of Mental Health Nursing, 2014. 23: p. 203– 211. https://doi.org/10.1111/inm.12046 42. Brekke, E., et al., Dilemmas in recovery‑oriented practice to support people with co‑occurring mental health and substance use disorders. International Journal of Mental Health Systems, 2018. 12(30): p. 1-9. https://doi.org/10.1186/s13033-018-0211-5 43. Reed, N.P., Josephsson, S., and S. Alsaker, Community mental health work: Negotiating support of users’ recovery. International Journal of Mental Health Nursing, 2017. 27(2): p. 814–822. https://doi.org/10.1111/inm.12368 44. Rowe, M., Citizenship and mental health. 2015, New York: Oxford University Press. 45. Islam I., Square pegs in round holes: The mental health needs of young adults and how well these are met by services – An explorative study. Journal of Public Mental Health, 2011. 10(4): p. 211– 224. https://doi.org/10.1108/17465721111188232 46. Helsetilbud til ungdom og unge voksne. 2012, Oslo: Rambøl. IS-204 47. Zacha, B., When the state meets the street: Public service and moral agency. 2017, Cambridge: Harvard University Press. https://doi.org/10.4159/9780674981423 48. Kitzinger, J., Qualitative research: Introducing focus groups. British Medical Journal, 1995. 311: p. 299–302.

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Social Support and Relational Recovery in the Age of Individualism: A Qualitative Study Exploring Barriers and Possibilities for Social Support in Mental Health Work

Bjørlykhaug, Knut Ivar1 Bank, Rose-Marie1 Karlsson, Bengt1 . 1Faculty of Health and Social Sciences, Institute of Health, Social and Welfare sciences, Center for Mental Health and Substance abuse, University of South- Eastern Norway, Drammen

This work is licensed under a Creative Commons Attribution 4.0 International License.

KEYWORDS Social Support, Social Barriers, Long-term Mental Health Challenges, Social Problems, Social Policy, Recovery

Abstract

Objective: Several studies point out social support and social work as crucial for mental health recovery. There is a need for extended knowledge in the discussion of what actually hinders and facilitates social support. This study aims to explore the experiences with social support of professionals, service users, and volunteers in three districts in Oslo. Through these conversations, we want to target and explore potential facilitators and barriers for social support and mental health recovery in the context of community mental health. Research Design and Methods: Author 1 and co-researcher 2 conducted seven focus group interviews (N=32) with semi-structured guiding. Using collaborative thematic content analyses, we organized the findings in three themes, with an additional six subthemes. Result and Contribution: This study aims to explore the experiences with social support of professionals, service users, and volunteers in three districts in Oslo, and findings are generated through the following themes: 1) the quality and vulnerability of social support: a) lived experience, mutual support, and understanding, b) “ghosting” and shame; 2) conditions that facilitate social support: a) stable This article has been peer reviewed.

Corresponding Author: Knut Ivar Bjørlykhaug. Faculty of Health and Social Sciences, Institute of Health, Social and Welfare Sciences, Center for Mental Health and Substance Abuse, University of South-Eastern Norway, Drammen. Email: [email protected]

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 36 environments and room for diversity, b) social rhythm and healing rituals; and 3) conditions that hinder social support: a) economic barriers, and b) social challenges in contemporary society. Conclusion: We found that stable environments, social rhythm, and healing rituals were important facilitators for boosting different layers of social support and mental health recovery. Crucial barriers for social support were connected to poor economy, the socio-economic challenges the services face, and feelings of shame related to struggle with mental health. In our discussion, we invite our readers to relate to and reflect on the findings in view of emerging socio-cultural trends and the ongoing pandemic.

Introduction

Mental health challenges are anticipated to be some of the most demanding problems in public health globally in the years to come, and to face these problems, we need to focus more on socio-ecological conditions to prevent and solve these challenges.1 In this study we focus on the barriers and facilitators for social support viewed from service users, professionals, and volunteers in the field of mental health work. There is a clear link between reduced social support and mental health challenges and vice versa; social support is crucial for good mental health and mental health recovery.2-4,5 Several systematic reviews of existing literature on mental health and social support have suggested linkages between social support and mental health or mental health service use in general and in specific population groups.3,4,6-9,10 The essence of this research is that social support is crucial for mental health recovery and for solving social problems, and that social work and arenas where people can meet when struggling in life are of great importance for mental health recovery, and generally for increased quality of life.

We know less about what actually hinders and facilitates social support, especially through the lens of people situated in the field and understood in a contemporary socio-ecological context.11,12 This paper therefore aims to explore barriers and possibilities of providing and receiving social support in community mental health.

This article is part of an ongoing research project developed at the Center for Mental health and substance abuse, University of South Eastern Norway. The project was developed by focusing on service user involvement from the start inspired by earlier work on co-research and the recovery tradition in mental health.13,14 We believe people with relevant survivor experience contribute to crucial perspectives considering what is needed in the field. We discussed the topic “social support and community mental health—what can it be?”—a topic that was our starting point and main focus. Both author 1 and 2 have lived experience in terms of mental health challenges. Over several meetings, the first author and five other people with relevant experience (people using mental health services or having challenges with mental health problems over time) developed the research project further and formulated three research questions, of which this paper aims to explore two:

1. What do professionals, service users, and volunteers within the community mental health field experience and describe as facilitators of social support for persons with mental health challenges?

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 37

2. What do professionals, service users, and volunteers within the community mental health field experience and describe as hindrances to social support for persons with mental health challenges?

Social Support: Theory, Definition and Relations to the Recovery Tradition

Social support is generally theorized as the amount of perceived and mutual support one has with family, friends, and loved ones. Cohen and Wills describe social support as an important factor in determining access to resources.15 The protective role of social support is cognitively mediated by our interpretation of life stressors or knowledge of coping resources we perceive, but also to be available to help others and to meet other’s needs.5 In an attempt to clarify a definition of social support, Finfgeld-Connett defines social support as “. . . an advocative interpersonal process that is centred on the reciprocal exchange of information and is context specific”.16 From ethnographic work exploring social support, we know that cultural and structural components are always important when we do research with the aim of understanding what is supportive and what is not.17

The conceptualization of social support is typically arranged in the following categories: (a) emotional, (b) instrumental/tangible, (c) and informational.18,19 Emotional support refers to having someone to talk to, having close relationships with family and friends, and feeling loved and cared for. Instrumental support refers to having someone to trust and count on in difficult life circumstances and dealing with the demands of daily living, such as getting to appointments, shopping, cleaning, help with money matters, paying bills, and so forth.19 Informational support consists of exchanges of practical information, such as providing the name of a good professional, tips on new health care services, new medications; having someone to have important life discussions with; and having support for one’s actions or statements.5 Practice and support that contribute to better social rhythm are also crucial components when exploring social support and severe mental health challenges.20 Our focus is mainly on emotional and instrumental support and both direct and indirect ways to work with support. We will more closely describe how we approached preparing the interviews in the methods section for the purpose of creating a shared understanding of the conceptualization of social support.

Our Socio-Ecological Point of Departure

In the mental health field, the recovery tradition stands strong and receives immense support. The authors within this tradition find themselves in many ways grounded in the orientation that embraces social living conditions when understanding mental health, social support, and recovery. The recovery tradition is deeply rooted in service user movements and professionals that have emphasized psychosocial aspects of working with and recovering from severe mental health challenges.21 However, it also faces extensive critique, especially considering its way of defining what recovery practice actually is, where some argue that within this tradition the attention is directed more toward excessive individual orientation. Consequently, one can here lose focus of the very nature of recovery as relational.21 We can say that this tradition relates to a broader range than, for example, how the psychiatric tradition works with the different layers of social support, and it has created new perspectives that unfold in the field from the scale of building recovery communities

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 38 to its influence in social policy in the wholesome work to support the individual recovery process. From our perspective, the recovery tradition works with the nature and ecology of social support with, for example. Bronfenbrenners’ ecological model in mind, that human development and social support are something that happen and are nurtured (or not) at different levels and layers in our history and contemporary life —from micro to macro levels.22 Even though we do not explicitly refer to this in our method, results, or discussion sections, it is embodied in our work and implicitly used as an analytical tool and therefore deserves epistemological recognition.

Research Design and Methods

Inspired by a phenomenological-hermeneutical approach by Brinkmann and Starks and Brown Trinidad, we attempt to explore and describe the participants’ subjective experiences. 23,24 For this article, the use of focus group interviews is the main method. Further, we relied on service user involvement from the start to better develop the research questions, and we employed a co-researcher with user experience throughout the whole research process. Author 1 and author 2 (co- researcher) organized and conducted the focus group interviews, the following analyses, and finally the writing of the paper. Author 3 contributed with critical comments and perspectives during the writing.

The research context is the community mental health field in three various districts in Oslo, including volunteers that collaborate with community mental health services.

Recruitment

We recruited participants in collaboration with leaders and professionals in mental health services in the various districts. The inclusion criteria for service users were 1) having a case decision of mental health support, and 2) having mental health challenges over time. Inclusion criteria for mental health professionals and volunteers were to have clinical experience and close collaboration with service users. Leaders and mental health workers communicated the information sheet and informed consent to relevant participants who met the inclusion criteria and contacted the participants after confirming their consent for participation. After agreeing to participate, we were connected with each other, and then we agreed to meet in familiar locations for all participants in the related districts.

Sampling

For the focus group interviews, 32 adults were recruited: service users (n=11), professionals (n=12), and volunteers (n=9). The focus groups were then divided into seven groups: three groups in one district, three groups in the second district, and one additional group in a third district. The groups were not mixed. That means there were three focus groups with service users (SU) in various districts, two for professionals (P), and two for volunteers (V).1 The focus groups were divided in the various ways to explore the research questions from different perspectives. Participants were purposely sampled. Demographic data considering the main criteria and aim of this study, which revolves around having experience with service

1 Focus groups will also be referred to by the first letters in the groups: SU, P and V.

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 39 use and service work, were collected: age, gender, time of experience, main challenge/diagnosis, district belonging, and socio-economic status.

In the service user groups, the age ranged from 22–67 years. Among the service user groups, the contact with the mental health system ranged from 4 to 25 years, and all participants reported to have one or more than one psychiatric diagnosis and struggle with long-term mental health challenges. All the service users received some kind of social welfare benefit and did not have a regular income. Types of psychiatric diagnosis reported varied from long-term depression, bipolar disorder, complex anxiety, and personality disorders. All the participants were Norwegian citizens, the majority with Norwegian ethnicity, while four participants had different cultural backgrounds. In the professional groups, the age ranged from 25–65 years. The professionals had backgrounds from different types of occupations: social work, nursing, mental health work, occupational therapists, and physiotherapists. In the volunteer groups, the age ranged from 42–75 years. Further, the volunteers were retired workers from different types of occupations, where some had service user experience from the mental health field and others were connected to the voluntary work for job training. All volunteers worked at a local meeting place for service users in two of the districts that were providing social support.

Data Collection

We wanted to create a room for broad discussion about the topic and research questions. In short, focus groups can be described as a form of group interview with the aim to gather several informants to discuss one or several topics.25 This type of data collection can, at its best, be less threatening for the participants when opinions, experiences, and ideas are discussed.26 All authors contributed in the making of an interview guide where a selection of a few open questions acted as a support through the interview and discussions. Author 1 and 2 facilitated the focus group discussions and informed the participants about our background. The focus group interviews had a duration between 1 and 1.5 hours, and the author and co-authors transcribed them verbatim. We used some time with each focus group to talk informally to build a relationship and to create a relaxing atmosphere—something of great importance in these types of settings, where the topic can be quite sensitive.27 We also explained the typical definition of social support from social support theory in the information sheet to better create a common understanding of the concept of social support. The starting point for all focus groups were the following questions (selection from the interview guide):

 Short description of the conceptualization of social support: how is it typically understood in theory and daily life?  Can somebody start to tell a little bit about how you understand and experience social support in your daily life (or work)? Give examples from your daily life and services.  Can you tell us about and describe experiences that you believe can facilitate social support?  Can you tell us about and describe experiences that you believe can work as barriers in facilitating social support?

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Collaborative Data Analysis

In the process of analyses, our approach has been to adopt the essential guidelines of thematic analysis as inspired by collaborative analysis.14,28 Author 1 and 2 prepared the analysis by reading and discussing ongoing literature in the field of participatory research.29 By ensuring a phenomenological-hermeneutical approach, the aim of the analysis was to capture the participants’ personal experiences and discussions connected to social support, and the researchers’ interpretations of the participants’ lived experiences.30,31 Our analytical approach and interpretation are semantic (explicit and data driven) and latent (connecting and theorizing data with a deeper interpretation). To a large extent, our analytic process follows the hermeneutic circle of interpretation. Ideally, as Braun and Clarke argue, the analytical process involves a progression from semantic description to a broader interpretation, and therefore our discussion will largely seek to theorize the significance of the findings in relation to other literature.28

Inspired by Braun and Clarke, our collaborative analysis followed several steps in order to achieve enhanced rigour in the organizing of the material: (1) naive reading; getting familiar with the data, (2) generating units of meaning, (3) developing emerging themes, and lastly (4) reviewing, defining, and naming themes.28 In the final stage, we considered the themes once again and tried to identify main themes that could describe both commonalities and differences. Consequently, after achieving an overview, we were able to observe themes that developed in what we found as domain discussions, and simultaneously, we were able to agree upon the main themes. Accordingly, we critically questioned the data continuously in the search of new insights and perspectives.

In our analyses, we systematized the findings in three organizing themes, each with two additional subthemes, related to the essence of the data material after inductive coding and our own interpretation. In our presentation of the total seven focus groups (FG), we will use FG Professionals 1 and 2, FG Service users 1, 2, and 3, and FG Volunteers 1 and 2. The numbers represent the groups and participants from the districts. Since this is an explorative study, the result section is essentially descriptive and data driven. Further, our presentation will use different terms to say something about the variations and similarities in the focus group discussions. For instance, we use “All focus groups mentioned,” “Several focus groups lifted” when three or more, “Some focus groups lifted” when more than one group touched a central topic, and “Focus group discussions among service users” to point out role-specific topics and points. We believe that this makes it possible for the reader to find and evaluate ideas across the groups and to understand where perspectives differ or overlap. The reason why we are not organizing the findings in a role-specific presentation is because the themes that inductively emerged from the data link the perspectives between the groups and in turn represent the essence of the major points that interweaves the descriptive discussions. The framing in the result section aims to capture the domain discussions in the focus group interviews.

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Ethical Reflections Participation in this study was voluntary, and both the information sheet about the study and an informed written consent was obtained prior to the interviews. Before each interview, we reminded the participants about their possibility and right to withdraw from the study at any stage and gave the relevant contact information to do so. We are not including any original or fictive names in this study and our focus on anonymization has been comprehensive. Accordingly, the Norwegian Centre for Research data (NSD) has approved the study under assigned project number 57041. Results In this section, we give a presentation of the significant empirical data through the domain discussions across the data sets. At the end of the findings section, we sum up some core commonalities and differences among the groups. The findings are presented in following themes: 1) the quality and vulnerability of social support: a) lived experience: mutual support and understanding, b) “ghosting” and shame; 2) conditions that facilitate social support: a) stable environments and room for diversity, b) social rhythm and healing rituals, and 3) conditions that hinder social support: a) economic barriers, and b) social challenges in contemporary society. The Quality and Vulnerability of Social Support

Throughout the discussion, all the participants in different ways expressed the importance of the quality of the support to achieve recovery. Hence, the participants discussed different layers that constructed helpful support and the challenges one faces with emotional and instrumental/practical levels of support when, for example, struggling with long-term depression or substance abuse. Some service users discussed how hard it was to maintain relationships when struggling with severe mental health challenges, and that social life in general gets more demanding—thus severe mental health challenges could be “the worst disease,” to cite one participant. As expressed by these participants, friendship and relationships are harder to sustain when faced with mental health challenges. Further, the participants in all groups stressed that quality of support will help to sustain friendships and relationships, which is harder to do when faced with mental health challenges.

Lived Experience: Mutual Support and Understanding

In all focus groups, the quality of social support showed as an important topic. Several SU participants suggested that having someone that could cheer in the background and truly understand their situation and create hope were presented as a crucial element in the quality of given support. One group among service users discussed what one called “vicarious hope” as a factor when you lose hope, a factor with many layers; for this kind of hope to appear, several things need to work together which our findings will show. Several focus groups discussed the value of lived experience to create the room for helpful support and that this was related to being really understood:

P2: “. . . I feel that it is about understanding and being understood. To be clear, it depends on the quality of the social support . . .”

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P3: “. . . and then it is about having someone that can create vicarious endurance when you cannot hold that hope or patience yourself. Vicarious hope . . . like these cheerleaders when I struggle to cheer myself up. . .”

P1: “. . . but suddenly you are alone with all that experience. And there is nobody that can support you or that experience if you have not experienced it; maybe it is difficult to have empathy related to what’s going on, and people get scared. . .” (FG, Service users 1).

All groups among SU discussed how important it was for the quality of the support that one could help one and another. We know that mutual support is important. It is not only about receiving but also about being able to give. How one succeeded or not was mainly connected to the structure in the services, neighbourhood, and society:

P2: “. . . the place that I lived before I didn’t have any support or feelings of belonging. I got some help to find a new place, and it was the best thing that happened to me. At this place we help each other, we can go together to the supermarket, walk in groups and so on. . .” (FG, Service users 2).

Several focus groups discussed how vulnerable you are when experiencing long- term mental challenges; everything in life becomes more difficult, and the social life more challenging.

In the discussion among volunteers that collaborated with mental health services, the term “love” was mentioned several times. Some stressed that there was some kind of mutual love. One engaged in this because one had an idealistic wish to contribute in people’s lives for support.

P1: “. . . well it is like this mutual love. We come here because we want to meet these people. Because we want to see how they are. We come here without any salary, at fixed schedule. . .” (FG, Volunteers 1).

Several focus groups also listed lived experience as crucial when talking about the quality of support. This did not mean that the professionals or volunteers should have lived experience only from mental health struggle. The discussion was often nuanced, and most participants agreed that offering something from your own life, showing that you also can be vulnerable, was the most important thing to develop connection, trust, and a better quality of relationship.

P5: “. . . again, it is something about experience. That you tell us you have been struggling yourself with x. That helps a lot. Maybe it is more integrated now, that the services create jobs for peer support workers. That’s very positive. If we meet people without any lived experience . . . it gets very difficult. . .” (FG, Service users 3).

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‘Ghosting’ and Shame

During the discussions with the service users, they stressed that taking care of friendship was especially difficult in challenging periods, something discussed among all the different perspectives. It is not always easy to be eager to spend time with somebody who is depressed, and isolation tends to be the most common strategy to avoid being a burden for others. However, the discussions presented several nuances in this topic and shared experiences of finding coping strategies to maintain friendships. The hardest thing, as several participants expressed, was to be forgotten or only appreciated during good times. Many experienced ‘ghosting,’ which means the people one considered as friends stopped reaching out when they were needed the most, as this dialogue shows:

P3: “. . . you get so tired because of the depression . . . I was so deep down in the darkness that I couldn’t stand anyone. . .”

P1: “. . . I feel that it is absence of, absence of that support. When they are pulling back or start to ghost you. . .”

P4: “. . . it is this power that you don’t have. And then it is difficult for others to take your perspective and then there will be no feeling of mutual support. They don’t understand, and then you often feel so alone. . .”

P3: “. . . yeah, because you can’t force people to understand. It is not something you can order. . .” (FG, Service Users 1).

All SU focus groups talked about the greater risk of falling out of track from regular society, losing friendships, and in general the overall cost of experiencing long-term mental health challenges. The struggle of being accepted and working with feelings of shame were things that circulated in the discussions, and several participants pointed this out:

P5: “. . . it is (long-term mental health challenges) pretty stigmatizing still. I feel that I often need to struggle with feelings of shame. Actually, every day. . .”

P1: “. . . Yeah, I feel the same. . .” (FG Service users 3).

This leads us to the next part of our findings, showing that some of these challenges could become more manageable in stable environments and in places there is room for diversity.

Conditions That Facilitate Social Support

“We are Each Other’s Network”: Stable Environments and Room for Diversity All focus groups discussed conditions that could facilitate social support when struggling, and conditions that could make social life flourish in general. Consequently, discussed in all the focus groups were the potential of stable environments and the room to express oneself. Additionally, the focus groups

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 44 expressed the importance of being able to just exist, without the need to contribute all the time, and to experience social environments that had patience and understanding. Connected to this, an important aspect was the ‘stayer-ability’ of the environment. If one experienced this, and the people that surrounded you had some kind of faith in you, one was more likely to be able to recover and contribute to the community again. Stability and stayer-abilities were listed as important aspects of helpful support over time:

P1: “. . . it is about stayer-abilities. To be able to be present in someone’s life over time, despite the challenges. That you have that person or those that endure. . .” (FG, Service users 1).

The room for diversity, openness, and breaking down taboos, connected to both people using the service and people working in the service, were important topics in all focus groups. One group among SU discussed the following:

P3: “. . . I have some experience with the importance of getting help from professionals that have both lived experience and professional competence. That ‘technical’ knowledge is important, and to have that mix is crucial. With the lived experience you can feel that maybe I will be able to recover again, and with the professional competence you have someone that knows the system . . .”

P5: “. . . and yeah, someone that is a bit stable in life, educated. That there is somebody that is healthy enough to get up in the morning. . .”

I: “. . . yes. But what is education . . .?”

P1: “. . . well, that openness that you showed before the interview started. I would guess that many social workers and ‘professionals’ that have lived experience still experience taboos. It is still like you should not get too personal, you should be professional and keep a distance . . .”

P2: “. . . yeah, and then we keep a distance as well. . .” (FG, Service Users 3).

In all the focus groups, the importance of (having) social meeting points was the main ingredient in the ‘lasagna’ of support. Accordingly, the ingredient of having stable environments in your local neighbourhood stood out as one of the most discussed layers when it came to creating support, and further, during the mental health recovery. Professionals stressed the importance of the fact that social aspects and activities also could be low key:

P1: “. . . somebody comes for a walk with us, some will do craft activities, but they come mainly for the social interaction. One of the service users that doesn’t say much is often just sitting in the living room, and I asked him why he sits there, and he said: ‘to feel the

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social life.’ But he doesn’t talk with anybody. . .” (FG, professionals 1). It seems that getting beyond traditional therapy and embracing people’s social lives were the most important when building social support. Many of the service users stressed that, after years with severe mental health problems, building networks and meeting people could be one of the most important ingredients in recovery—namely, getting out of the therapy room:

P3: “. . . I was seeing a psychologist and psychiatrist for many years . . . in the end we needed to end the treatment and find something else. Find other people. Enough of being alone. When you meet other people, you understand you are not alone. . .” (FG, service users 2).

Especially where the communities could offer meeting places that could enhance social support, mental health recovery was established to be more active. To achieve this, one of the secrets seems to be able to create places with some kind of stability in relationships that also can offer social rhythm and meaningful activities. One group of volunteers discussed this:

P1: “. . . I guess the secret is relationships over time. Many service users have been here for a long time. We are in a way each other’s network. We know each other’s histories. Service users, volunteers, professionals. We know each other, and it is all about the environment. It is not us that bears the hardest days for the service users, it is the environment. And the sum of us . . . we know the good days, so we can handle the bad days. . .” (FG, Volunteers 1).

During the interviews, the participants in different ways discussed the importance of rhythm and the possibilities for connection or “just hanging out with someone” that happened in this rhythm. This builds a bridge to our next sub-theme.

Social Rhythm and Healing Rituals

Social rhythm is important to achieve or work toward a euthymic mental and physical state, and several participants talked about the lack of rhythm caused by psychosocial stressors. The term refers to the regularity of engaging in social activities throughout the week. All focus groups described in their discussions the importance of social rhythm when you feel like you are ‘losing it.’ When experiencing serious life crises and mental health challenges, some activities can work as rituals in the absence of rituals and rhythm in everyday life. Several activities could boost the feeling of emotional and practical support. Especially meals, something quite universal for us all, crystalized as a healing ritual:

P2: “. . . we talk at breakfast, and during lunch. And we talked about this with a new guy that was a refugee, that this is the most important activity. To meet and feel the sense of community. It seems like for many this is the most important thing we do, the meals we have together. . .” (FG, Volunteers 1).

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The process of creating these ritual activities offered both rhythm and a stable point in an existence often characterized by uncertainty and struggle. Many of the participants in all focus groups pointed out that maybe these kinds of activities also filled a hole in an individualistic society, which is clearly connected to our last major theme.

The professionals discussed how their activities could be connected to social support, in the meaning of both emotional and practical support. In both focus groups, the participants reflected upon how crucial it is to try to embrace the potential support in all activities. Just the possibility to have someone to share a meal with could be that one activity that opens up many aspects of togetherness:

P2: “. . . I believe that all our activities in some way are related to social life. And then it gets like naturally supportive, sometimes at least. We have a lot of service users that have no family and are going through hell. Just the fact that you can share a meal with someone, walk for a trip, play games with. . . and we can be there and support. Many people come to get the feeling of support. . .” (FG, Professionals 1).

Another aspect related to the quality of social support was to have a place to go and to meet people that can help with practical matters in everyday life. Sometimes, just knowing that a meeting place exists can be enough to get some relief. Other activities that the focus groups discussed were meeting points where people thrived and got the chance to meet both old and new friends. For instance, every Friday, one of the services organized a quiz followed by coffee and cake:

P4: “. . . for example the quiz on Fridays tends to gather a lot of people. It is very social, and many are always showing up. . .”

P1: “. . . It is the ‘high point’ of the week, there are good vibes all day. For many that come, closeness and distance can be challenging, but they come anyways. It is kind of important to not miss the weekly quiz. And at least the cake and coffee that follow (laughter) . . .” (FG, Professionals 1).

Conditions That Hinder Social Support

Economic Barriers The discussions touched upon several aspects related to the barriers for social support. One aspect was the individual one: your own isolation when you are down and depressed or have incredible anxiety and do not want to or are unable to interact with anyone. The struggle of maintaining friendships, as mentioned, and finding nurturing relationships tend to be difficult in these periods. Furthermore, another aspect was regarding the structural components: problems with money matters, how services were organized, and issues with contemporary society, namely individualism and ‘unsocial’ media.

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Having problems in being able to sustain an occupation is a well-known challenge when we struggle with severe mental health challenges. This obviously interferes with personal economy. Almost all the focus groups discussed the challenge of having too little money and how this relates to having a social life in the context of mental health recovery. As these groups discussed, this can also create loneliness, because many popular activities today are expensive.

One tendency people may have, is to avoid social activities because it is too expensive to participate:

P2: “. . . it often happens that someone says ‘Sorry, I am sick,’ for example, if you need to spend some money. Going to the movies is expensive. And then you are going for a coffee later, and that too is expensive. Many don’t have the money. Everything is expensive and that’s difficult. . .” (FG, Service users 2).

It is obvious that having too little money can be a potential barrier for some, and thereby a potential barrier for building networks and boosting social support. Economic barriers in the services were also listed as a potential barrier when trying to support people and offer help. Accordingly, this varied in the different districts. The services that had a good money flow from the politicians in specific districts could offer better services. In one of the districts, the participants among volunteers stressed that:

P3: “. . . it’s all about money and resources. For instance, we don’t get money to offer television anymore, because we need to cut in our budget. We don’t have the resources and that is an obvious limitation. . .” (FG, Volunteers 1).

Among the professionals, there were also a lot of worries and negative experiences related to consequences for service users when cutting the service budget. In one district, a stable meeting point was closed down, and a lot of service users fell into crisis. The social rhythm and healing rituals that the place offered suddenly disappeared. As explained here, the numbers (evidently) decide:

P4: “. . . we who work on the ground experience the consequences of thinking numbers in favour of profession. And, unfortunately, here the numbers set the agenda. . .” (FG, Professionals 1).

Social Challenges in Contemporary Society

The challenges with social media, individualism, a ‘diagnostic culture,’ and collective egoism were discussed in several focus groups when asked to describe barriers for social support. The discussions were nuanced and pointed out some of the new and arising social problems we face in our time.

P3: “. . . in theory, social media can be a good thing, and help to connect, find stuff. But fuck, I don’t know. My experience is that SoMe can enforce the negative feelings when you struggle. . .”

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P5: “. . . yeah, it’s so intense, you get so distracted. It is too much. . .” (FG, Service users 3).

Among the service users, there seemed to be an agreement that social media could offer some benefits, but simultaneously often had a negative impact on (their) mental health. Also, the short distance from having a thought to producing an actual tweet or a Facebook post could lead to regrettable updates and comments, which could lead to embarrassment and humiliation.

Another dimension the service user focus groups discussed was the challenges (and possibilities) with getting a diagnosis. Clearly, there still seems to be a lot of stigma related to severe mental health challenges. One said that:

P2: “. . . I try to explain to people sometimes that I struggle with paranoia and can be psychotic in periods, and. . . I don’t walk around with a poster, because society still tends to see us as potential killers or looneys. . .” (FG, Service users 2).

The participants discussed experiences connected to a ‘diagnostic culture’ and that to receive some diagnoses would pigeonhole you, while to receive others would be more beneficial. One of the participants put it like this:

P1: “. . . it is often as if you get defined by your diagnosis. A lot of the time I feel like I can talk but not be listened too. That I am being filtered through the diagnosis, in a way. That makes me feel powerless. . .” (FG Service users 1).

Furthermore, there was agreement among the service users that receiving or having a diagnosis mostly was helpful to receive social benefits and to fit into programs that could offer some treatment:

P3: “. . . The only advantage with a diagnosis is that it can lead to getting the help that you desperately need. . .”

P1: “. . . yeah, and what society accepts in the mix of diagnosis and suffering is something I have experienced as crucial for social support. It was allowed to come and be depressed, but to have that other diagnosis was like: ‘Oh, she is a difficult person and we don’t want those kinds of people here’. . .”

P3: “. . . that’s a barrier. Some diagnoses stick with you and work as barriers . . .” (FG Service users 1).

Almost all the focus groups mentioned contemporary society as challenging in different ways. The most common phrases and topics in the conversations/discussions were the challenges connected to individualism and the experiences of egoism, stigma, and maintaining a façade.

P3: “… To be honest, the whole thing, it’s just a façade. Sometimes I think we are a bit lucky that we are at the bottom of the social

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ladder, because at least we don’t need to pretend all the time. . .” (FG, Volunteers 1)

P2: “. . . we are ego-oriented, the whole bunch. . . we are all just egoists. . .” (FG Volunteers 2).

It seemed as if contemporary society and the society that we are a part of was something a lot of the participants wanted to talk about when discussing social support and mental health recovery. All the focus groups discussed the challenges of being social in our time and the barriers they face when trying to connect with other people. This is not unique for only the participants in this study.

Commonalities and Differences Between the Groups: A Short Summary

We merged the discussions to create a lively description between the groups, and our analyses showed us that it might be more commonalities than differences when talking about how one understands social support, and in the description of barriers and facilitators for social support. What is special for the different groups? A) Service users describe more specifically how to live with the stigma and diagnosis and how this can work as potential barriers for social support. All groups point out the importance of addressing this. Meeting professionals with lived experiences combined with professional competence can potentially boost the different layers of social support: emotional, instrumental, and informational. The importance of having meeting places that offer social rhythm over time is crucial. These places need to develop the room for diversity (and more importantly: they need to exist). Maintaining friendship is difficult when struggling with long-term mental health challenges, and service users point out that some diagnoses work as barriers; others do not. The SU participants also discussed the barrier of shame related to struggle with mental health. Shortage of money potentially creates more loneliness, something discussed by SU participants. B) Professionals describe how to collaborate with social support and feelings of stigma, and that having the possibility to offer stable environments is crucial in doing so. Structural challenges such as poor leadership and lack of resources to keep meeting places open work as barriers when working with social support. C) Volunteers describe that they can play a different role in offering meeting places and work against stigma. What is distinct for the role of a volunteer worker is that they don’t get paid, something they describe as a potential boost for the trust in their relationships with service users, thereby offering a different type of emotional support. They work as volunteers more or less solely because they want to and often have lived experience with mental health challenges, and some of the volunteers’ meeting places offer what traditional services often cannot: time and continuity. As one of them said beautifully: “. . . I guess the secret is relationships over time. Many service users have been here for a long time. We are in a way each other’s network. We know each other’s histories.”

The baseline seems to be a common agreement of the potential of meeting places and their healing (or not) possessions. If meeting places in local communities either thrive and develop to boost social support or dissolve and disappear, this idea is related to socio-ecological matters on different levels, and the way they are organized. In all, the groups’ topics related to contemporary society were discussed in the attempt to describe potential barriers for social support.

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Discussion

As the findings in this study, together with others, show, the quality of social support is deeply connected with how the service users, professionals, and volunteers experience how they can collaborate with practical and emotional matters in daily life. All this can build a bridge to and open up the different layers of social support and a sense of community, and obviously provide a better foundation for mental health recovery. In relational, political, and societal interactions, there always lie many possibilities and barriers. Our findings contribute to new knowledge about how these possibilities and barriers are experienced, discussed, and described in the field. It is especially interesting to see the levels of reflection the participants had on contemporary society. This leads our discussion toward finding a connection between the domain discussions and the socio-cultural events we believe play a crucial role in how we work with social support.

We want to lift and expand the discussion into three main topics that regard socio- ecological/cultural conditions in relation to the focus groups discussion: I) The diagnostic dilemma in a culture of diagnosis II) How do we build mutual social support? And III) Relational recovery: and so what? We also reflect on our study concerning the ongoing pandemic.

The Diagnostic Dilemma in a Culture of Diagnosis

Some of the service users and professionals experienced that psychiatric diagnosis sometimes can be a helpful tool. At the same time, psychiatric diagnosis can follow you your whole life and potentially create different barriers, as the participants in this study discussed. As some of the participants pointed out, we still tend to categorize and stigmatize in our contemporary diagnostic culture. Several participants highlighted that diagnosis mainly worked as an opportunity when it came to social welfare benefits, but it stopped there. Some experienced being “filtered through the psychiatric diagnosis” they had received. To be able to create an equalizer between somatic and psychiatric diagnosis is still a utopia. At the same time, as service user participants in this study listed, social media and the digital boom also come with a sacrifice and risk. It can potentially enforce the networks’ understanding of one as ‘crazy’ or ill, and it is easy to regret posting something. The ‘digital journal’ with screenshots and other possibilities makes all of our online/social media activity exposed.

Our ability to support one another and to be attentive toward other people’s needs is challenged by the individualistic, hyper-digital, and competition-oriented society that we have built.32 This is said while acknowledging that our progress, which often can be experienced as a paradox when we look at all the mess, in many ways has made life better for the majority of human beings in some aspects.33 On the other hand, we believe that this progress comes with a sacrifice. Despite our improvements, we also believe that we are destroying some of the foundation for community, to talk with each other face to face, and that our need to put people in psychiatric boxes sometimes can work as barriers for social support. As some participants discussed, specific psychiatric diagnoses almost serve as a positive status symbol, and others work as barriers for support. This adds to the experience shown in other studies.

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Researchers from many fields are challenging the problem with a diagnostic culture, and how it potentially creates more illness than facilitates support.34

It is remarkable how several participants in this study contextualized contemporary society within the topic of social support and the ability to experience quality of life. Accordingly, it seemed like several participants in the different groups felt that something just was not right, that the social rhythm in their communities and the potential of building relationships in some ways were broken. The consequences of witnessing the pace of instability and an ever-shifting community with fragile relations might be increased loneliness, stress, poor mental health and frustration—something that might be even more exposed in the time of COVID-19.35

How Do We Build Mutual Support?

In our universal need for social support, one of the most important aspects is to be able to give something back. This is highlighted by the participants in this study. As we know, it is crucial to feel that we are connected in our community, and that the things we do in some way or another matter. This study shows that building stable environments with the possibility for social rhythm, lived experience, mutual support, and what we have called healing rituals, potentially can boost mutual support and feelings of togetherness. Places that represent something as the ‘stayer-ability,’ which one of the focus groups discussed, are not only transferable to relations on the micro-level but are also transferable to the macro level. As shown in the domain discussions, the participants in this study underline that we need places that we know will be present; a place to find comfort, a place to meet people that you like to meet, a place where you can get/receive and where you can give. We need to build places and community where support can arise. In this process, we need both a variety of creative social work and an active social policy because we know social policy matters in the process of facilitation.36 However, this is, of course, easier said than done. Can we force friendships? Is there no such thing as difficult persons and social environments which, rather than build us up, break us down? Loneliness and relationships are complex. We are aware of this and that human beings have the potential of evil and power abuse, and further that collective evildoing may always be a risk that we need to live with. 37 On the other hand, as several participants described in this study, the idealism, altruism, and love people have for one another are dimensions that can be nourished with the right stimulus.

Relational Recovery: And So What?

This study, among others, shows that there still is a need to focus on how to reclaim community and social work in the process of both building public health and facilitating mental health recovery.11,38,39,40 What is particularly interesting in this study is the hands-on discussions on what the barriers in doing so can be and that they are relatable to ongoing debates. This invites us to understand even better how we need to go forward and build the relationships that are crucial in the process of recovery. To be able to do so, we need to investigate what is breaking community and relations so that we can reclaim it, and understand the very nature of hope and recovery as relational.41 In the ongoing pandemic, which already has had a devastating impact on many people around the world, and where social inequality in health in many aspects again arises as brutal injustice, there are also present some

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 52 possibilities in rebuilding how we see the world, how we make services more available (or not), and how we measure quality of life, that everything is relational and that different layers of social support play a crucial role.42, 43 Can the crisis help us reclaim community and altruism, or will it make things even worse, especially for people with poor health and little money?

On the road to reclaiming community and reducing inequality in health, we need an active social policy that includes many voices and experiences. Building supportive communities, and thereby potentially boosting social support, has been discussed for a long time, and is now sometimes presented as something ‘radical’ and ‘new’ in mental health research, for instance, in presenting scenarios for future mental health care in a social perspective.13,44,45 Social hope seems to be more important to embrace than ever, with reference to our contemporary circumstances.46 We believe that our collective consciousness needs to be opened up toward the ongoing and future political scenarios, both considering public health in general, and when we are experiencing mental health challenges and crisis specifically. This means that our role in democracy needs to be even more engaging and politically vigorous.

Wilkinson and Pickett argue that the battle for status and competition has been ever more intense since the 70s, and that diagnosis and social problems such as depression, psychosis, schizophrenia, and narcissism might have increased related to an overall general level of stress.47 The division between the richest and the poorest is increasing, not only globally, but also in countries such as Norway, where inequality between citizens has been and still is, compared to other countries, at very low rates. If relational recovery means trust and support between citizens, we need to look at how to engage people in vulnerable situations even more into politics. Inequality in mental health is discussed as a rising problem in, for instance, Norway.48 If we want to achieve good mental health for all and facilitate mental health recovery, politics is indeed something personal that needs more attention when developing services and supportive communities. This requires participation. One aspect that surprised us, both in the sampling and in the field work, was the lack of diversity regarding ethnicity and cultural background. We believe that there is a need for more in-depth research and knowledge when it comes to understanding other cultures’ perspectives of social support and mental health.

Conclusion

This study shows facilitators and barriers in building social support as viewed from seven focus group interviews among service users, mental health professionals, and volunteers. In our analysis, we found that stable environments, social rhythm, and healing rituals were important facilitators for boosting different layers of social support and mental health recovery. The different perspectives show us the commonalities and differences when working with social support. However, there was an agreement that the quality of social support can increase if communities are able to offer stable meeting places with room for diversity. We also found that crucial barriers for social support were connected to poor economy, the socio-economic factors the services face, and different challenges in contemporary society, such as disruption of social relationships through social media. Feelings of shame related to mental health challenges can also still work as a barrier and the diagnostic culture can work as a barrier for support. In our discussion, we invite our readers to regard the socio-

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 53 cultural aspects in our time that are reflected upon in the focus groups’ discussions. From our perspective, this affects the way we can work with social support and facilitate mental health recovery for people experiencing long-term mental health challenges.

Implications

 The mental health field needs to revisit the meaning of relational recovery and design stable meeting places with room for diversity and lived experience in local communities. That requires close collaboration with volunteers and policy makers.  The diagnostic culture still needs to be challenged by lived experiences because it can work as a barrier toward social support in both civil society and mental health services.  Mental health workers need to engage more in socio-political matters and facilitate broader democratic engagement, inclusion, and collaboration with service users.  Socio-economic inequality creates inequality in health and instrumental social support regarding economy is crucial toward participation and increased quality of life. Several participants report that scarcity works as barriers in social life and thereby social support.  More research is needed regarding multi-cultural aspects of social support and how this may affect the need for diversity in building more inclusive and supportive local communities.  The ongoing pandemic makes it even more crucial to work with social support in local communities, to evaluate accessibility adjustments, and to work toward a progressive social policy that concretely helps people living with mental health challenges.

Acknowledgements

This study has been made possible through funding from Dam foundation Norway, Health and Rehabilitation. The authors have no conflicts of interest to disclose.

Limitations

This study is a value-oriented study. This might affect the result and create biases. Another limitation is that the focus groups cannot capture all the different opinions and might result in some people’s perspectives having more weight/emphasis than others. We could also have benefited from collecting a broader sample regarding ethnicity/cultural aspects.

References

1. United Nations. Special rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. 2017. Retrieved from the United Nations Human Rights Office. 2. Webber, M., and M. Fendt-Newlin, A review of social participation interventions for people with mental health problems. Social Psychiatry and Psychiatric Epidemiology, 2017. 52(4): p. 369- 380.

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3. Wang, J., et al., Associations between loneliness and perceived social support and outcomes of mental health problems: a systematic review. BMC Psychiatry, 2018. 18(1): p. 156. 4. Tough, H., J. Siegrist, and C. Fekete, Social relationships, mental health and wellbeing in physical disability: a systematic review. BMC Public Health, 2017. 17(1): p. 414. 5. Baiden, P., W. Den Dunnen, and B. Fallon, Examining the independent effect of social support on unmet mental healthcare needs among Canadians: Findings from a population-based study. Social Indicators Research, 2017. 130(3): p. 1229-1246. 6. Terry, R., and G. Townley, Exploring the role of social support in promoting community integration: An integrated literature review. American Journal of Community Psychology, 2019. 7. Tol, W.A., et al., Mental health and psychosocial support in humanitarian settings: Linking practice and research. The Lancet, 2011. 378(9802): p. 1581-1591. 8. Beauregard, N., A. Marchand, and M.E. Blanc, What do we know about the non-work determinants of workers' mental health? A systematic review of longitudinal studies. BMC Public Health, 2011. 11(1): p. 439. 9. Leigh-Hunt, N., et al., An overview of systematic reviews on the public health consequences of social isolation and loneliness. Public Health, 2017. 152: p. 157-171. 10. McDonald, K., Social support and mental health in LGBTQ adolescents: A review of the literature. Issues in Mental Health Nursing, 2018. 39(1): p. 16-29. 11. Topor, A., et al., Not just an individual journey: Social aspects of recovery. International Journal of Social Psychiatry, 2011. 57(1): p. 90-99. 12. Public health message: Mastery and oppurtunities. Report no. 19 to the Norwegian storting M.o.H.a.C. Services, Editor. 2014-2015. 13. Karlsson, B., and M. Borg, Recovery: Tradisjoner, fornyelser og praksiser. Gyldendal akademisk, 2017. 14. Borg, M., and K. Kristiansen, Medforskning-å forske sammen for kunnskap om psykisk helse. Universitetsforlaget, 2009. 15. Cohen, S., and T.A. Wills, Stress, social support, and the buffering hypothesis. Psychological Bulletin, 1985. 98(2): p. 310. 16. Finfgeld‐Connett, D., Clarification of social support. Journal of Nursing Scholarship, 2005. 37(1): p. 4-9. 17. Schlecker, M., and F. Fleischer, Ethnographies of social support. Springer, 2013. 18. Langford, C.P.H., et al., Social support: A conceptual analysis. Journal of Advanced Nursing, 1997. 25(1): p. 95-100. 19. Sarason, B.R., et al., Interrelations of social support measures: Theoretical and practical implications. Journal of Personality and Social Psychology, 1987. 52(4): p. 813. 20. Frank, E., H. Swartz, and E. Boland, Interpersonal and social rhythm therapy: An intervention addressing rhythm dysregulation in bipolar disorder. Dialogues in Clinical Neuroscience, 2007. 9(3): p. 325. 21. Price-Robertson, R., A. Obradovic, and B. Morgan, Relational recovery: Beyond individualism in the recovery approach. Advances in Mental Health, 2017. 15(2): p. 108-120. 22. Bronfenbrenner, U., Toward an experimental ecology of human development. American Psychologist, 1977. 32(7): p. 513. 23. Brinkmann, S., Philosophies of qualitative research. 2017, Oxford University Press. 24. Starks, H., and S. Brown Trinidad, Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research, 2007. 17(10): p. 1372- 1380. 25. Wilkinson, S., Focus groups. Doing Social Psychology Research, 2004. p. 344-376. 26. Krueger, R.A., Focus groups: A practical guide for applied research. Sage Publications, 2014. 27. Tjora, A., Kvalitative forskningsmetoder i praksis, 2. utgave. Gyldendal, 2013. 28. Braun, V., and V. Clarke, Using thematic analysis in psychology. Qualitative Research in Psychology, 2006. 3(2): p. 77-101. 29. Tangvald-Pedersen, O. and R. Bongaardt, Towards a tinkering participatory research method in mental health. Scandinavian Journal of Disability Research, 2017. 19(1): p. 7-17. 30. Manen, M.V., From meaning to method. Qualitative Health Research, 1997. 7(3): p. 345-369. 31. Kvale, S., et al., Det kvalitative forskningsintervju (3. utg., 2. oppl. ed.). Gyldendal akademisk, 2015. p. 18-20. 32. Monbiot, G., Neoliberalism–the ideology at the root of all our problems. The Guardian, 2016. 15(4). 33. Rosling, H., O. Rosling, and A. Rönnlund, Factfulness: Ten reasons we're wrong about the world–and why things are better than you think. Sceptre. 2018.

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 55

34. Brinkmann, S. and A. Petersen, Diagnoser: Perspektiver, kritik og diskussion. 2016. 35. Saltzman, L.Y., T.C. Hansel, and P.S. Bordnick, Loneliness, isolation, and social support factors in post-COVID-19 mental health. Psychological Trauma: Theory, Research, Practice, and Policy, 2020. 36. Van der Wel, K.A., et al., European health inequality through the ‘great recession’: Social policy matters. Sociology of Health & Illness, 2018. 40(4): p. 750-768. 37. Vetlesen, A.J., Evil and human agency: Understanding collective evildoing. Cambridge University Press, 2005. 38. Sælør, K.T., et al., You never know what’s around the next corner: Exploring practitioners' hope inspiring practices. Advances in Dual Diagnosis, 2015. 39. Veseth, M., et al., A stabilizing and destabilizing social world: Close relationships and recovery processes in SUD. Journal of Psychosocial Rehabilitation and Mental Health, 2019. 6(1): p. 93-106. 40. Cottam, H., Radical help: How we can remake the relationships between us and revolutionise the welfare state. 2018. 41. Sælør, K.T., B. Stian, and T. Klevan, Big words and small things. Journal of Recovery in Mental Health, 2020. 3(1): p. 23-38. 42. Stojkoski, V., et al., The socio-economic determinants of the coronavirus disease (COVID-19) pandemic. 2020. 43. Xiao, H., et al., Social capital and sleep quality in individuals who self-isolated for 14 days during the coronavirus disease 2019 (COVID-19) outbreak in January 2020 in China. Medical Science Monitor: International Medical Journal of Experimental and Clinical Research, 2020. 26: p. e923921-1. 44. Arnhoff, F.N., Social consequences of policy toward mental illness. Science, 1975. 188(4195): p. 1277-1281. 45. Giacco, D., et al., Scenarios for the future of mental health care: A social perspective. The Lancet Psychiatry, 2017. 4(3): p. 257-260. 46. Rorty, R., Philosophy and social hope. Penguin Books, 1999. 79. 47. Wilkinson, R., and K. Pickett, The inner level: How more equal societies reduce stress, restore sanity and improve everyone's well-being. Penguin Books, 2020. 48. Stoltenberg, C., Folkehelserapporten 2014. Helsetilstanden i Norge. Folkehelseinstituttet, 2015.

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Conference Abstracts Refocus on Recovery Canada 2020

The Journal of Recovery in Mental Health is proud to publish a selection of abstracts from what was to be the first Refocus on Recovery conference outside the United Kingdom. Here you will find the abstracts of innovative and thoughtful research and lived experience accounts that will no doubt advance our understanding of personal recovery in Canada and abroad. The conference was to be in held in Toronto in 2020 and was sponsored by Ontario Shores Centre for Mental Health Sciences, the Mental Health Commission of Canada and the Canadian Mental Health Association. Many scholars and mental health champions came together to organize this event. Unfortunately, due to the pandemic, we were unable to proceed with the conference. However, we are hopeful that in the near future Refocus on Recovery Canada will indeed become a reality.

This work is licensed under a Creative Commons Attribution 4.0 International License.

Recovery and Diverse Populations

Author: Alicia Pinelli

Title: Trans(cending) Recovery: Discussions with Trans and Non-Binary Folks on Eating Disorder Recovery

Abstract: Despite approximately one million Canadians meeting the diagnostic criteria for an eating disorder, there is a deficiency in research and evidence regarding prevalence, treatment approaches, and prevention methods. The research that does exist commonly refers to the historical roots of the diagnoses, deepening the Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 57 understanding of a single narrative - the white, cisgender, female. This narrative has impacted the ways that treatment for eating disorders is provided, leaving those who fall outside this margin to be overlooked. Research shows that transgender individuals are at the highest risk for developing eating disorders, and yet there are no treatment programs designed with this community in mind, creating lasting effects on those within the community who attempt to access support. The purpose of this study was to gain an understanding of what recovery from an eating disorder looks like for transgender and non-binary individuals, and the impact of gender identity on the process. To accomplish this the research utilized a qualitative semi-structured interview design. This allowed for a more flexible conversation while creating the environment for interviewees to express their experiences, decisions and feelings in a way that can contribute to the understanding of how eating disorders are connected to transgender populations. Seven individuals were interviewed for this study, each identifying as having engaged in eating disorder recovery for a period of over one year and having their gender identity fall under the transgender umbrella. Each participant provided a 60 to 90-minute interview, which were compared and analyzed using a thematic analysis. The experiences of eating disorder development and recovery of transgender and non- binary individuals are unique and complex. However, some important commonalities do exist which could be seen throughout the participant narratives. Including: experiences of transphobia and gender discrimination, pressures related to conforming to cisgender body expectations, discrimination in health and mental health settings, and both positive and negative experiences in utilizing the internet as support. Further, this study led to implications for practitioners regarding the need for additional training on transgender issues as well as general eating disorder knowledge, creating supportive and inclusive environments, and the development of transgender specific treatment programs integrating gender identity into eating disorder recovery. Mirroring the research process, this presentation is guided by the voices of the participants. Utilizing the power of their lived experience to trans(cend) the societal understanding of recovery through discussing the current culture of eating disorder treatment, hopes for future program development and changes. In this presentation we will: 1. Gain a basic understanding of transgender specific needs within mental health recovery, with a focus on eating disorders 2. Explore the social and historic context of transphobia and oppression of transgender and non-binary individuals within the mental health sector 3. Build an understanding of the impacts of gender identity on the recovery process 4. Increase confidence in providing inclusive support to transgender and non-binary individuals regarding eating disorder recovery.

Recovery Across the Lifespan

Author: Emma Skinner, Andrea Laforge

Title: Recovery-Oriented Group in Geriatric Mental Health: An Application of the CHIME Framework Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 58

Abstract: The Mental Health Commission of Canada (MHCC) introduced Recovery- Oriented Practice Guidelines in 2015. Since that time, many mental healthcare providers in Canada have embedded recovery practices designed to complement clinical care. The CHIME framework is often used to anchor such practices aimed at supporting personal recovery - namely connection, hope, identity, meaning and empowerment. The MHCC guidelines outline that recovery-oriented services should be responsive and adapted to a person's age and phase of development. As the population ages, it is of value to ascertain what recovery and recovery-oriented practices look like for geriatric service users. The current presentation provides an overview of recovery-oriented programming within an inpatient geriatric mental health unit in a specialized mental health hospital. Using the CHIME framework, a 5-week program was developed for the inpatient geriatric psychiatry unit. Each session focused on one component of the model and was included a definition of the theme, discussion and goal setting activity. From the session on Hope, some participants identified the following goals: have more positive people in their life to help reach other goals; having a healthy diet and getting stronger to walk again; finding appropriate housing and getting ready for discharge; eat a healthy diet to contribute to wellness; being able to get out, off the unit, do more walking, and go outside for fresh air. From the session on Identity, participants were able to recognize components that make up their identity such as: being a mother, being persistent. Participants also identified that attending classes like this helps to provide self-discovery that will help to foster a positive identity. Participants indicated: reading, being reliable, being a dancer, artist and poet. From the session on Meaning participants acknowledged: helping others; activities that are loved, strengths and contributions to the world. From the session on Empowerment participants identified that the long-term goal was to leave the hospital and short-term goals were to walk again and use the walker. This could be achieved by going to physio, working on pivot transfers and practicing to walk whenever possible. The long-term goal was to get discharged and short-term goals were to meditate and attend groups. From the session on Connectedness participants created goals related to increasing social connections such as: reconnecting with an old friend; baking extra and sharing with someone, and being friendlier.

Results from the programming revealed that older adults' sense of self, connection, and recovery is very much a central focus of their mental health goals. These results reveal that although hope and identity may evolve over the lifespan, the CHIME framework is applicable to supporting recovery in the geriatric population.

Author: Winnie Sun, Sheri Horsburgh

Title: Using Virtual Reality-Based Reminiscence Therapy to Promote Social Connectedness of Persons with Dementia Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 59

Abstract: Reminiscence therapy is a multi-sensory treatment that combines the senses of sight, touch, taste, smell, and sound to help persons with dementia (PWD) fondly recall events, individuals, or settings from their previous experiences. Reminiscence therapy is an important evidence-based intervention for PWD as it has been shown to improve their well-being by providing relief from boredom and loneliness while reducing symptoms of depression agitation and fostering individuality. This project aimed at developing an innovative, non-traditional prototype to improve the implementation of reminiscence therapy for PWD through immersive virtual reality experiences. The purpose of this study is to understand the effects of virtual reality reminiscence therapy in assisting PWD in managing behaviours and psychological symptoms of dementia (BPSD). The intervention framework was modular which supported immersive virtual reality (VR) using stand-alone VR head-mounted displays to provide users freedom of movement unconstrained from tethered VR devices. At the same time, non-immersive VR was developed using monitors, television, or projectors to visualize and engage with the content without the need of wearing any device, therefore providing equitable access for all PWD to experience this form of reminiscence therapy. Our project aimed at supporting the development, implementation, and evaluation of a virtual reminiscence intervention for PWD. Data was collected through audio-recorded in-depth interviews conducted with persons with dementia lasting approximately 30 to 45 minutes and focus groups were conducted with caregivers (family members/health care professionals) lasting for one hour. The evaluation of virtual reminiscence therapy was conducted using data analytics and physiological measures including facial and eye tracking technology which used video-recording to provide quantifiable metrics for evaluation of the intervention. Additionally, clinical data on patients who have had the prototype intervention were assessed to examine possible decreases in agitation and other BPSD following intervention. Documented incidents of BPSD and medication usage pre and post intervention with reminiscence therapy were examined through chart review using the usability testing evaluation form. Enriching the traditional form of reminiscence therapy with VR can empower caregivers to customize the virtual reminiscence experiences, which is expected to help PWD with maintaining and preserving their personal identity during disease progression and challenging circumstances associated with BPSD. The positive mental stimulation associated with virtual reminiscence experiences has the potential to improve PWD’s quality of life by increasing their sense of social connectedness, confidence, and comfort which is anticipated to have a direct impact on facilitating safe and adequate care from both informal caregivers and health care professionals. Results from this study and benefits of immersive virtual reminiscence interventions could be used as a framework for creating best care models for patients with dementia and helping manage BPSD.

Author: Catherine Willinsky, Kira London-Nadeau, Armaan Fallahi, Jimmy Tan, Ally Campbell

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 60

Title: Exploring the Link between Cannabis & Psychosis: A Case Study in Balancing Flexibility and Direction in Youth-led Harm Reduction Projects

Abstract: Although cannabis is now a legally regulated substance in Canada, its use still comes with risks. Many gaps persist in public health approaches and education around the impact of cannabis use on mental health. One of the most contentious areas is the link between cannabis and psychosis, particularly among youth. Cannabis use is linked to an increased risk of developing psychosis, and the evidence for the association is strong. Twenty-five percent of high school students report using cannabis, with the majority of first episodes of psychosis and schizophrenia diagnoses occurring in late adolescence/early adulthood. Given this risk, it is particularly important that young people be informed about this complex relationship. To meet this need, the Schizophrenia Society of Canada created the Explore the Link project, a youth-led harm reduction campaign designed to provide balanced information to Canadian youth about the link between cannabis and psychosis. This initiative aims to address another crucial gap in early intervention by disseminating education on harm reduction and mental health. Above all, this project prides itself on being made by youth, for youth. The ultimate goal is to create relevant, evidence-based, and accessible knowledge translation products. Such ambitious goals require navigating the tension between remaining flexible and adaptable to the evolving needs of our team members and our audiences. The project consists of two major phases. The first phase, project development, includes the establishment of the project team. The team consists of content experts, evaluators, and the youth advisory committee. It also includes creating an up-to-date website, developing knowledge translation projects, fostering learning opportunities, and planning a social media campaign to maximize reach to youth aged 15-25 years old. This phase also includes the development of a logic model and robust evaluation plan. Phase two of the project will focus on implementation, promoting the website as a central resource of frequently asked questions, videos, and links to external resources. This will include a social media campaign, ongoing generation of new content, outreach, partnership development and dissemination, and continuous monitoring and evaluation of project implementation. Throughout the project, we are using a co-design approach to ensure flexibility and responsiveness (e.g., youth direction of the research, evaluation and digital committees) and direction (e.g., co- creation of general timelines and planning & dissemination plans). Our commitment to flexibility and remaining current will constitute a strength, as represented by certain key performance indicators including 1) Increased viewership of the website; 2) Considerable engagement with the website content; 3) Increased sharing of website content and; 4) Increased number of followers on social media as well as better engagement with social media posts. The website will engage our audiences through videos and interactive content, appealing to a range of youth with a variety of different cannabis use profiles (non-users, users, people who want to stop using, and people who are interested in using but want to get more information before doing so), and will track interaction with our surveys and resources. While this approach is time and resource-consuming, our expectation is that it will generate higher quality products, while also building capacity among the youth engaged in the project. This project may Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 61 serve as an example of robust youth engagement in the co-creation and dissemination of innovative harm reduction and mental health education across Canada and beyond.

Diverse and Innovative Models of Service Delivery

Author: Amber Smith

Title: Getting engaged: Examining the association between employee engagement and patient recovery in mental health care

Abstract: Engaged employees are defined as those who are passionate about their work, and who put forth discretionary effort at work. In short, engaged employees go above and beyond their job description for the benefit of their patients, the organization, and themselves. Engaged employees are the organization’s most desirable employees because they consistently show innovation and commitment to their work. At Ontario Shores Centre for Mental Health Sciences (a tertiary mental health hospital), the Recovery Assessment Scale (RAS) is used to assess the level at which a patient has achieved meaningful change in their recovery from mental illness. The purpose of this research was to examine the extent to which various levels of employee engagement are associated with patient-related recovery outcomes. An Employee Opinion Survey, which is used to measure employee engagement, was deployed to all staff at the hospital in the Fall of 2017. Based on industry benchmarks, each unit within the hospital was categorized as having employee engagement that was either high or low. Corresponding patient self-reported improvement in RAS scores were contrasted between high and low engagement units to determine whether there was an association between employee engagement and patient outcomes on the RAS. Results revealed a significant association between employee engagement on a unit and the corresponding patient-related recovery improvement. In particular, units whose staff reported above average engagement saw a significantly higher increase in their patient’s RAS scores at discharge relative to admission (M=8.67) compared to units who reported below average levels of engagement (M=2.89, p<.001). This study found a significant association between employee engagement and patient self-reported recovery within a tertiary mental health care hospital. Specifically, this study demonstrated that those units with highly engaged employees saw a significantly better rate of recovery improvement for their patients. The implications of this work for mental health care leaders and organizations will be discussed.

Author: Joanie Theriault

Title: Recovery Colleges after a decade of research: A literature review

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 62

Abstract: Introduction: Since the first Recovery College (RC) opened, many more are operating worldwide. A body of knowledge on the effects of RC is growing suggesting benefits on recovery, goal achievement, knowledge, self-management, improved well- being, social support, reduced stigma and services use. However, a state of knowledge on the current empirical literature on RCs and the methods used over the years to evaluate them has not yet been made. What are the effects of the RCs on the students attending, the staff and trainers and on the community? What methods have been used to evaluate the effects of the RCs studied? In the process of co-developing and implementing the first RC in Quebec, the team leading the project felt that reviewing the evidence about RCs was timely and would benefit the project and the multiple partners involved. It would deepen the understanding of the principles and mechanisms of action of the RC model. The purpose of this presentation is to share the results of a literature review on the empirical evidence supporting the benefits of the RCs.

Methods: A literature review was undertaken in Medline and Scopus electronic databases with two independent evaluators screening first title and abstract and second full article if necessary. Inclusion criteria were applied and an international expert-panel on the RC model was formed to validate and recommend additional articles.

Results: 460 articles were found and a total of 31 publications were included. Among those, 41.9% (n=13) were qualitative exploratory methods, 32.2% (n=10) were quantitative designs and 25.8% (n=8) were mixed methods studies. Quantitative studies were mainly survey studies or presentations of descriptive statistics. Only three studies used a pre-post design. The results of RC evaluations over the years shows high satisfaction among students, attainment of recovery goals in terms of strengthened social network, improved knowledge and skills, improved well-being and quality of life and integration or return to education and/or work. Few studies reported on service providers who attend for continuing education. In those who did, changes in practice by adopting a more egalitarian relationship with service users and valuing experiential knowledge was reported. Some studies also showed reduction in cost and service use for people who attend RCs.

Discussion: A deeper understanding of the impact on everyday practice of health service providers involved in RCs (as students or trainers) is needed. Additionally, effects on anti-stigma attitudes and beliefs, and self-management skills should be assessed by standardized tools in future studies. Moreover, strong evidence-based on clinical randomized trials and long-term follow-up designs are under-represented and may be considered as future evaluation methods. However, a reflection must take place as how this can be achieved in the context of RCs, as they involve people of different horizons in an environment aiming to be facilitating and empowering. This is the first literature review that included only peer-reviewed publications on original studies evaluating the impact of RCs at every level. It reinforces the importance of conducting high level evidence studies on the effects of the RCs in a way that is compatible with the RC model.

Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 63

Author: Je-an Cedric Cruz

Title: Varied mental health services routes: An innovative approach

Abstract: One of the leading mental illnesses of today is depression. Several of its symptoms are low self-esteem and sense of exclusion from society. Most university students, especially immigrants, experience this kind of illness. How can they afford the mental health services they need? This paper will present innovative approaches in which those services could be afforded. In the first part of the paper, I attempt to discuss the recent literature behind the illness in Canadian context. Next, I show the traditional ways of addressing depression followed by showing three innovative ways to combat the illness in a university setting that are affordable. I will then discuss further why these ways could alleviate the symptoms of the illness. Further, I include interviews from university students who had experienced these innovative approaches and what they would say regarding the traditional modes of acquiring mental health services. Results show that innovative ways are impactful. Indeed, there are other ways to afford help in the mental health context. The innovative ways presented in this paper foster a love for learning, development and engagement with diverse cultures.

Author: Leanne Minichillo

Title: Recovery through Patient-Led Introspection and Self-Awareness: Writing for Rehabilitation

Abstract: Introduction: After surviving a two-year psychotic break, I discovered an effective method of recovery that involved transposing my anxious thoughts into perceptible reality by writing them down. Through this practice, I was able to reflect directly and rationally on worrisome thoughts that I perceived as following “what if” trajectories. It made my anxiety easier to manage and offered a reference point for future invasive thoughts. It helped my recovery significantly, and I’m confident that this rehabilitation method will also help others. Methods: In 2015, I experienced the onset of a psychotic break. Contrary to my previous lifestyle of being extremely social, I became anxious and depressed, withdrawing from social activities, and only left my home when necessary. I had minimal interactions, and part of my psychosis involved stopping most contact with family and friends. After receiving a late-life ADHD diagnosis, my psychiatrist insisted that I email him every day, which I usually did each morning. I experienced serious anxiety while waking up, when the negative thoughts would ricochet in my head. To write about those distressing thoughts, swirling around my head with no limits or logic, I was able to purge them. This allowed me to extract the anxiety and visually analyze and challenge the thoughts. On the computer screen the thoughts became real. The content started off superficial, but I eventually began to write more Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 64 intimately and descriptively. I also wrote during the daytime when I would have an invasive thought, using whatever paper I could find at that moment. I used my kitchen’s whiteboard to draw out maps and flowcharts of my thoughts in order to explain them to my partner, my doctors, and myself. Written down, the frantic thoughts were concrete and manageable as they were now on two-dimensional paper as opposed to the compounding “what if” layers that exist in our minds that swiftly send our thoughts into multiple trajectories, leading to further anxiety. Results: Because it was on paper, I could go back to the content and reflect on my thoughts without the ‘what ifs’. I could recognize the severity of the thought when it had been written out and how, after analysis, it was efficiently managed, setting the tone for handling thoughts similar to those in the future. For example, “I remember when I thought that, but then I wrote it down and worked it out, and, now, I can apply that logic to this experience, making things much easier and dissipating the anxiety much faster.” As I began to analyze my thoughts, I self-diagnosed as BPD (Borderline Personality Disorder). Having my thoughts written out provided a form of therapy where I would combine ACT, CBT, DBT, journaling, and art therapy, and it worked! I gained confidence in my ability to express and analyze my thoughts to understand what I needed; I worked in tandem with my doctors and, eventually, rehabilitated to the point where I no longer needed constant therapy. Now I am able to work independently, with infrequent visits to the psychotherapist (every two months as opposed to every two weeks). Discussion: I would like to present my (lived) experience as a viable method of recovery and rehabilitation: self-awareness through patient-led introspection. Understanding oneself can help to build confidence and stabilize mood, leading to a more positive recovery and sustainable rehabilitation because there is now a clearer understanding of the ‘why’, and the documentation becomes a manual for oneself. I believe it can be done by everyone, regardless of their cultural group or age, whether it’s writing out a single word each day or drawing an image, as long as the expression is tangible, it can be used as an effective point of reference for the patient’s own future.

Author: Stephanie Lucchese, Ifat Witz

Title: Addressing the Gap: Mental Health Wellness Check Post-discharge from the Emergency department

Abstract: Mental health is the leading cause of disability worldwide. 1 in 5 people are diagnosed with a mental illness in North America. Despite the increase in mental illness, there continues to be a lack of timely mental health supports and there are shortages of mental health professionals in the community. Thus, resulting in individuals seeking mental health care in Emergency Departments (EDs). In partnership with Gerstein Mobile Crisis Intervention Follow-up team (MCIF), St. Michael’s has been offering patients an innovative, recovery-oriented service, a Wellness Check Service program with the aim to provide timely mental health and addiction supports post-discharge from the ED. It takes on average 2-3 weeks for patients to be connected to formal out- Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 65 patient supports when they are discharged from the emergency department and oftentimes, patients re-present to the hospital because they are unable to cope with their mental illness symptoms without community support. Timely mental health follow- up services post-discharge from the hospital can ease the transition to the community while patients wait for their referrals to be processed and accepted. Further, this form of support can minimize Emergency Department visits and hospital re-admission rates. The time following hospital discharge for a mental health concern is recognized as a high-risk period for suicide and homelessness. Lack of connection with community- based treatment and support is a significant factor associated with poor outcomes in the post-discharge period. Therefore, the aim of the Wellness Check Service is to provide patients with timely mental health and addiction supports post-discharge from the ED to improve patient care and experience. The Wellness check is a hospital and community partnership where patients are offered a wellness check 24-48 hours post-discharge. Whenever possible, in-person contact will be made in the ED by Gerstein Crisis Centre’s Mobile Crisis Intervention and Follow up Team within 40 minutes to 4 hours from the time of referral. Subsequent follow up will be arranged in the community. This provides the patient with the potential for a 30-day follow-up with the Gerstein Centre as well as connection to other community partners. We are offering our patients an innovative, recovery-oriented program that provides mental health support in the community post-discharge from the hospital. This program utilizes a crisis prevention model because our goal is to provide our patients (who do not require an in-patient admission for mental health), with timely support in the community to help them with their mental health needs and to prevent them from re-presenting to the hospital. At St. Michael’s, we provide our patients with patient-centered care. Research questions include: 1) Do patients find the Wellness Check Service to be of benefit by bridging the gap of support until their formal supports are in place? 2) Does the program help reduce ED re-admissions to SMH ED within a one-month discharge time period? This study will utilize a mixed methods research design. Initial findings: goals of the project are met and feedback from patients have been very positive.

Author: Catherine Briand, Myreille Bédard, Joanie Thériault, Breitner Gomes, Julio Medeiros

Title: The implementation of a Recovery College in Quebec: in real co-partnership

Abstract: Introduction: Recovery Colleges are health and recovery learning centres that were developed in England to lead mental health services towards a paradigm shift involving horizontal relationships with patients instead of top-down relationships. Currently established in several countries around the world, the Recovery College model promotes an educational approach in the community, in social diversity, where all people (mental health staff and service users, family members, and other community members) have access to training courses on mental health, well-being and empowerment. The model is based on the creation of an inclusive, diverse learning space as well as on the sharing of knowledge and the proximity of students from Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 66 different backgrounds. Each training session is co-constructed and facilitated by a mental health professional and a person with a lived experience of mental health challenges in order to ensure that the different types of knowledge (experiential, clinical and theoretical) are made available. In this panel, we will present the implementation experience of Quebec’s Learning, Health and Recovery Centre, the first Recovery College in Quebec. The implementation history based on the testimony of a peer trainer (MBédard), the Quebec co-partnership model (CBriand), theoretical modeling and mechanisms of action (BGomes), the preliminary results of the effectiveness study (JMedeiros) and the future prospects (JThériault) will be presented. Methods: Quebec’s Recovery College project has been a research project since the beginning of its implementation. We have developed research strategies aiming to: 1) assess the effects of the model on the achievement of personal learning objectives, anti-stigma attitudes, empowerment and psychological well-being for all stakeholders (partners, trainers and students from diverse backgrounds); 2) evaluate the quality of the environment of learning and social inclusion offered to the students, in particular the quality of social relationships and services provided; 3) document the issues involved in implementing the model. Results: Quebec’s Learning, Health and Recovery Center is the first Recovery College to rely on the co-funding and co-leadership of 12 financial partners from different sectors of activity (health, education, citizen) as well as fully integrated into a research project. The preliminary results confirm the importance of implementation monitoring and of the key principles of the model's effectiveness in promoting both the well-being and recovery of individuals, as well as changes in the practice of mental health professionals and the fight against stigmatization. Discussion: The debate with the public will allow us to reflect on four key issues and principles of the model: a) co-development and intersectoral partnership; b) patient partnership and egalitarian relationships; c) social inclusion, diversity and combating stigma; d) the empowerment of vulnerable populations (severe mental disorders, elderly, youth).

Author: Richard Joseph Crant

Title: General Assumptions in the treatment, recovery, and sustainability among Mental Health, Post Traumatic Stress, and Autoimmune Disorder Patients

Abstract: After having 27-years of lived experience with mental health concerns and conditions, I began a research investigation in 1987 to seek answers to the problems of bullying and general unkindness among the public, families, and peers. This research investigation turned into a longitudinal study of behavior and eventuated the development of a new cognitive evolution model/theory. The intention of this study was to determine the effectiveness of a general set of assumptions and insights derived from cognitive model/theory C=ea2 in the recovery of a broad base of mental health conditions, illnesses, and autoimmune disease disorders. A small sample of individual PTSD case study subjects were educated on and given insight into theory C=ea2 during an open subject discussion utilizing text and telephone conversations for 5-6 weeks. Multiple case studies were conducted using the same method over a period of 5-6 Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 67 weeks, one with a subject diagnosed with schizophrenia, while another case study was carried out with a subject diagnosed with Ankylosing Spondylitis reading some materials over a period of thirty days. Study participants were required to keep a journal and make notes giving anecdotal self-reported evidence from observation and to include any changes in thinking and perspective. During an ongoing survey of people within the general public and field experiments, a discussion was initiated with individuals where C=ea2 was introduced to determine immediate effectiveness, agreement, and/or disagreement. In following up, we kept in touch and in communication with all participants for a period of eight (6) years ending in 2017. The results were conclusive in determining cognitive model/theory C=ea2 as being effective in the treatment, recovery, sustainability, and growth of patients living with mental illness and other conditions.

Author: Christine Courbasson, Kishany Subramaniam

Title: BounceBack: An innovative service delivery for mental health problems

Abstract: Anxiety and depression are the most commonly reported mental health disorders. When they are ignored they tend to worsen even though they are very treatable. While there is a great demand for counselling services to treat anxiety and depression, wait lists are long, cost can be high, and these services are often difficult to access. A cognitive behavioural therapy (CBT) based telephone coaching program, BounceBack, was developed to meet the needs of people with mild to moderate anxiety and depression. This presentation outlines the method and effectiveness of this coaching program that can be easily implemented to serve the needs of this population, reduce waitlists and increase efficiency of mental health resources. Nine hundred and four individuals with mild to moderate depression and anxiety were either self-referred or referred by a primary care practitioner. They were contacted within five days of the referral. They were assessed both within two weeks of the referral with standardized measures of depression and anxiety and after participating in the BounceBack program. This program consisted of coaching participants over the telephone in more than 15 languages to collaboratively address anxiety, depression, and other mental health issues using a CBT protocol with standardized sessions and use of workbooks. Individuals completed on average 4-6 sessions using 4-7 workbooks specific for mental health problems. Statistical analyses show significant pre-post treatment decrease in symptoms of anxiety and depression, and increase in participants’ self-ratings of understanding, knowledge and confidence to manage mood or worry, quality of life enjoyment and satisfaction, all showing a large effect size (d>0.8). This alternative delivery model of recovery and collaborative CBT telephone-based coaching is easily implemented and can efficiently and cost effectively serve the needs of people with mild to moderate anxiety and depression. It enables people to bypass physical and temporal barriers that would prevent them from receiving the mental health support they need. Practical implications of the research are discussed with a specific focus on Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 68 implementation, access, delivery, cost effectiveness and participants’ and coaches’ own experience of the program.

Author: Kerrie Wriker, Tracey hardinge, Pam Pettigrew

Title: Lived Experience Paid Peer Support Model Proposal

Abstract: CMHA Durham offers opportunities for individuals with Lived Experience to be trained and hired as peer support staff. Our model is an avenue to help people move forward by building strength, resilience and advocacy in their recovery journey. Our programs have been developed using evidence-based programs to provide training to our peers, co-design and evaluation feedback to ensure we are meeting the needs of our peers and clients. Our program structure includes the following: Training: A10-week training program is offered in our Recovery College Wellness Centre (RCWC). As one of only a handful of Recovery Colleges in Ontario we are excited about the role and opportunity to expand our Peer program. Each Peer is given an individualized learning plan to suggest additional opportunities to assist their personal growth through the RCWC. These courses include mentorship, facilitation, leadership, Soft Skill Solutions and co-design. Peer Support Specialists are full time staff who provide coaching, mentorship, program delivery, 1:1 support & supervision, manage program finances and statistical information, pair Peers with Adult Educators and provide case management and crisis intervention. Once Peers have completed training they can apply to be a Paid Peer Supporter. The Peer Support Specialists establish an appropriate role with each Peer based on their skill set and personal recovery journey. Peers Support Roles Include:

Facilitating a discussion group offered through RCWC, Co-facilitating a peer support workshop, DBT, 1:1 support in a classroom

Participating in CMHA Durham advisory committees, co-designing groups, RCWC Greeter and Peer Navigators

At CMHA Durham we value the roles that Peers can play in the support of our clients’ recovery journeys and believe they should be compensated for their valuable contribution. We have operated Peer Support Services for over 23 years and have a strong voice within our community.

Our model is individualized to have a client centred, strength based, inclusive approach. We believe that peers should be recognized and compensated for their time, experience and unique lens given to our programs.

Through co-design and program evaluations peer workers indicated that providing the opportunity to give back was more important than the actual amount of money they Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 69 receive. This model of payment also provides us the opportunity to offer more positions and training opportunities.

Author: Francois Lauzier-Jobin, Laurence Caron

Title: How is Refocus on Recovery Canada 2020 walking the talk? A participative analysis between the recovery paradigm and three recovery-oriented conferences

Abstract: Why did you start this project? It is established that personal recovery vocabulary and principles are often overused, recovered, co-opted, misused, misunderstood, both by citizens, by those who are experiencing mental disorders, as well as by researchers and mental health service providers.

To guide providers and caregivers through these semantic drifts and practices, several tools have been developed to assess the recovery orientation of caring professionals and services (AACP-ROSE, REE, ROSI, RSA, etc.). These tools allow, among other things, to appreciate the agreement, and implementation of the principles of recovery in the delivery and structure of services. It is no longer simply a question of assessing the proper administration of psychological or pharmacological treatments to passive patients, rather a question of broadening the scope to all factors that may promote or hinder recovery: empowerment, hope, development of a desirable identity, a sense of connection and the promotion of a greater meaning to life (CHIME). For example, one principle is the inclusion of people in recovery at every level: nothing about us without us. In light of those fundamental reflections, questions arise: How is a public event on personal recovery (such as a symposium, conference, knowledge exchange forum, etc.) be driven by the principles of recovery? What is a recovery-focused event? Are there tools that can guide our actions? How can those tools and principles be the most useful? Methodology

The methodology is divided in two steps that are leading us to create a recovery- focused fidelity tool designed for events involving stakeholders from different backgrounds (researchers, managers, stakeholders, recoverers, etc.). In the first step, a literature review based on the scope study method, will be used to identify efforts to systematize the principles of a recovery-based approach. This review will focus as much on theoretical work, empirical studies, and literature reviews. This step will end with the selection of a framework that will be selected or adapted from the identified models.

Secondly, this modelling will be operationalized into fidelity assessment tool (analysis grid) where each of the main principles of recovery will be dissected in echelons. For example, Arnstein's participation scale (1969) could be used to assess participation with its eight levels ranging from "non-participation" to "total control." This scaling will be Journal of Recovery in Mental Health Vol. 4 No. 1 Winter 2020 ISSN: 2371-2376 70 based on scientific knowledge, but also on the professional and experiential knowledge of the authors. As an editor’s choice, the grid’s design will be strength-based so that it can focus on strengths rather than flaws and will be action-oriented to identify the next possible step to improve if desired.

Results and discussion: After a short presentation on how the tool was created, and on how it was applied to two Quebec events, participants in the room will be asked to assess each of the dimensions presented in regard of Refocus on Recovery Canada actions and process.

As such, the fidelity assessment tool will be applied during Refocus on Recovery Canada. Its application will be illustrated with examples from three conferences: the 19th AQRP event, the Quebec Ministry of Health and Social Services Adult Mental Health Forum, and the current Refocus on Recovery Canada 2020 event. The authors have participated in these three events in different ways: on the executive committees, on the scientific committees, as presenters and as participants.