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In the last decade, various experiences have been organized aimed at helping future social work education professionals reflect on the power relationships that define institutions and social policies. These experiences, based on the participation of users of social services (now known as experts by experience (EBE) and as part of service user involvement (SUI), aim to create opportunities for shared learning based on mutual knowledge and understanding of the worlds of others. The research described in this article focuses on the impact that SUI experiences had on future social educators who participated in three (so far) 14-week courses in which fifteen students and a group of EBEs learnt together. Undergraduate students were asked to evaluate the course methodology, the skills they acquired and what they learnt, via two focus groups and 45 individual narrative reports. The results showed that students appreciated learning together in a safe environment, collaborating on activities. They felt that participation helped them improve their socio-personal skills and advance their professional development. They valued the importance of learning together as an instrument of social transformation. Our research suggests that SUI or EBE involvement experiences, based on learning together in initial training as an instrument for transforming socio-educational professional practices, are valuable. [ABSTRACT FROM AUTHOR]

This research evaluated the impact of service user involvement on the knowledge and competence development of social work students in their Field Forum class at Belmont University, Tennessee, USA. Over a two-week period in March, 2019, students heard from service users with diverse aspects of lived experience in the following areas: Childhood abuse, trafficking, domestic abuse, mental ill-health, homelessness, addictions and disability. The service users involved worked closely with local community groups in the university's neighboring area and shared their lived experience with the students in key aspects of social work skills, knowledge and values. In their evaluations, the students indicate positive growth in their perceptions and understandings in important aspects of social work competence such as communication skills, attitudes, values and principles of social work practice. Importantly also, the students indicated that exposure to service users' lived experience in the classroom helped sharpen their preparations for field practice. These findings have resonance and applicability internationally, particularly in the US, for social work educators preparing to involve social work service users/clients in social work education. [ABSTRACT FROM AUTHOR]

Despite efforts to address the growing severity and complexity of student mental health issues, challenges persist in data quality and application, thereby hindering progress. This article is built upon three decades of cumulative expertise from the authors, complemented by insights gathered through the extensive observations of students and practitioners within the realm of student mental health. Drawing from both robust evidence and hands-on experience, it presents evidence-based recommendations aimed at enhancing data capture and utilization in alignment with the principles and methodologies of learning health systems. The approach is based on four interconnected themes: (1) Learning from global insights on university students’ mental health; (2) Measuring, monitoring, and managing data; (3) Involving student and stakeholder perspectives; and (4) Mapping transitions, access, and systems for student mental health services. These themes encompass both the individual student journey and the broader organizational layers of universities and colleges. Ten recommendations are made for supporting universities and colleges to move towards adopting the principles of learning health systems to support students’ mental health.

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers. [ABSTRACT FROM AUTHOR]

This paper reports findings from pedagogic research evaluating the impact of the involvement of survivors from the World Trade Center attacks in New York City in 2001 in trauma-specific social work education. A pedagogic approach to mental health education is discussed which aims to prepare students to develop trauma-informed assessment and intervention skills concurrent with their encounters with trauma survivors in field practice placements. The small-scale research involved surveying students’ evaluations at a university in New York, following exposure to first-hand accounts of survivors’ experiences. Across the three areas—confidence in knowledge of trauma, impact on learning, and preparation for field practice—the evaluation findings indicate that the students’ knowledge, gained from the involvement of 9/11 survivors, improved over time. This paper presents the background to this project, preparations involved, and findings from research evaluations with the students. The findings suggest that the involvement of those with direct and lived trauma experience in classroom teaching, whilst challenging, can yield positive impacts for students. The 9/11 survivors poignantly shared with students that their lives were changed forever in the aftermath of these events. The findings have potential global educational impact and resonance. [ABSTRACT FROM AUTHOR]

There is a growing recognition of the value of Expert by Experience (EbE) input into the training of forensic psychologists. This study aimed to gain insight into the experiences of doctoral trainees of an EbE led workshop. Sixteen trainees wrote reflective pieces of work following attending an EbE designed and led workshop. Four main themes were found: What I took from the workshop; Workshop delivery; What will I do differently?; and What needs to change? The findings point to the EbE led workshop having a positive impact on trainee current and future work practices. [ABSTRACT FROM AUTHOR]

Service user and carer involvement is firmly established as an integral part of social work education in the UK, with a growing body of evidence demonstrating its beneficial effects on student learning. Calls have been made to further develop its theoretical base and evaluate its impact on students’ future practice. This article contributes to these aims, by following a cohort of undergraduate UK-based social work students. Using a focus group, the research elicited the views of the students on how classroom-based learning by people with lived experience affected their learning and practice pre-qualification. The findings are underpinned by the theme of ‘challenging the narrative’. They assert the powerful effect service user narratives have on bringing issues ‘to life’ and challenging stereotypes, as well as affecting students’ practice. However, challenging the narrative also linked to students’ reflections on what counts as ‘legitimate’ and reliable knowledge and a disconnection between University-based learning and messages received in practice. The paper argues for an ongoing critical evaluation of the impact of pedagogy led by people with lived experience, with the dual aims of identifying what benefits student learning, as well as critically dissecting power, authority and knowledge. [ABSTRACT FROM AUTHOR]

The involvement of service users in social work education is longstanding, and there exists a rich body of research which explores the perceptions, attitudes and experiences of service users, academics and students in relation to this involvement. However, existing reviews of the literature conclude that few studies examine the impact of service user involvement in education on subsequent social work practice. This scoping review takes a broader approach, by mapping research which evaluates the impact on practice of service user involvement in education across domains of health and social care. Utilising the PRISMA guidance on scoping reviews, we conducted a systematic search of articles published between 2003 and 2021. The search generated six qualitative and three mixed methods studies for inclusion, which were analysed using narrative synthesis. All studies supported the claim that involvement of service users in professional education can make a constructive contribution to practice. The review highlights four themes from the studies: the application of transformative learning; impact on outcomes; influence on organisational practice; and challenges to integrating learning into practice. These themes provide a foundation for identifying potential future directions for research and pedagogical practice on service user involvement within social work education. [ABSTRACT FROM AUTHOR]

Service user involvement and participatory research are central concepts in social work practice and research. Inspired by Spivak's essay "Can the Subaltern Speak," this article draws on the poststructural and postcolonial theory to unpack the assumptions about essentialism, representation, and division of labor underlying the concepts of involvement, participation, and voice. The article combines Spivak's theory about the subaltern and Rancière's theory about politics as dissensus to shed light on how the space for authentic service user voice risks being minimized, corrupted, and co-opted. I discuss the challenges arising from this for understanding service user involvement and participatory knowledge production and suggest possible steps toward handling these challenges. [ABSTRACT FROM AUTHOR]

The mental health recovery movement recognises the importance of expertise by experience held by service users alongside healthcare practitioners. Recovery has gained attention in music therapy but a situation prevails where practitioners and researchers set research agendas. A group of music therapists recognised the absence of service user voices in music therapy research, and in 2017 they established a network called the Alliance for Recovery Research in Music Therapy (ARRIMT). In 2020, they started to develop a multi-national platform to explore mental health recovery in relation to research. Service users and music therapists were invited from three countries including Ireland, Norway, and the United Kingdom (UK). Local meetings were held to introduce stakeholders from each country, followed by three online meetings. Music was central to each meeting and each built upon content from previous meetings. Our conversations opened up new possibilities for working together. Four priorities for practice and research were identified: Music as a connector; music between sessions; music technology; and, online music therapy. This report will share our process and what we learnt from working together. We contextualise our work within concepts of foregrounding and mattering and view this work as a crucial step towards meaningful co-production. We reflect upon the role of music in building group identity alongside the importance of careful curation. Finally, we present ideas for future music therapy and mental health research. Group Description In 2018 the Alliance for Recovery Research in Music Therapy (ARRIMT) was founded as an international group of music therapy service users, researchers and practitioners from Australia, Ireland, Norway, and the United Kingdom. Fundamental to this group is the concept of recovery where those who use and those who provide mental health services work together to share knowledge and experiences that can have a positive impact on mental health service delivery. Key to this is listening carefully to the voices of those who use music therapy so that their views and experiences influence how music therapy is offered in mental health services. The founders and coordinators of the group are Tríona McCaffrey, Hans Petter Paulen Solli, and Catherine E. Carr. Other members of the group are Cornelia Bent, Darmuid Boyle, Oda Bjørke Dypvik, Kenneth Dybdahl, Tommy Hayes, Lauren M. Hickling, Jane Fernandez, Anne Malerbakken, Brendan Ruddy, and Torgrim Vågan.

Meaningful service user involvement in health professions education requires integrating knowledge held by "lay" people affected by health challenges into professional theories and practices. Involving service users redefines whose knowledge "counts" and implies a shift in power. Such a shift is especially significant in the mental health field, where power imbalances between health professionals and service users are magnified. However, reviews of the literature on service user involvement in mental health professional education do little to explore how power manifests in this work. Meanwhile critical and Mad studies scholars have highlighted that without real shifts in power, inclusion practices can lead to harmful consequences. We conducted a critical review to explore how power is addressed in the literature that describes service user involvement in mental health professions education. Our team used a co-produced approach and critical theories to identify how power implicitly and explicitly operates in this work to unearth the inequities and power structures that service user involvement may inadvertently perpetuate. We demonstrate that power permeates service user involvement in mental health professional education but is rarely made visible. We also argue that by missing the opportunity to locate power, the literature contributes to a series of epistemic injustices that reveal the contours of legitimate knowledge in mental health professions education and its neoliberal underpinnings. Ultimately, we call for a critical turn that foregrounds power relations to unlock the social justice-oriented transformative potential of service user involvement in mental health professions education and health professions education more broadly. [ABSTRACT FROM AUTHOR]

Patient and public involvement (PPI) in research improves relevance to end users and improves processes including recruitment participants. PPI in our research has gone from being non-existent to ubiquitous over a few years. We provide critical reflections on the benefits and challenges of PPI. Case studies are reported according to a modified GRIP2 framework; the aims, methodology, impact of PPI and critical reflections on each case and our experiences with PPI in general. We report five UK projects that included PPI from teenagers, families, people living with dementia, autistic people, and people from South Asian and d/Deaf communities. Our experience has progressed from understanding the rationale to grappling methodologies and integrating PPI in our research. PPI took place at all stages of research, although commonly involved input to design including recruitment and development of study materials. Methodologies varied between projects, including PPI co-investigators, advisory panels and online surveys. On-going challenges include addressing social exclusion from research for people that lack digital access following increasing on-line PPI and involvement from underserved communities. PPI was initially motivated by funders; however the benefits have driven widespread PPI, ensuring our research is relevant to people living with hearing loss. [ABSTRACT FROM AUTHOR]

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Abstract Introduction Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review.

Abstract Introduction Co-production is a collaborative approach to service user involvement in which users and researchers share power and responsibility in the research process. Although previous reviews have investigated co-production in mental health research, these do not typically focus on psychosis or severe mental health conditions. Meanwhile, people with psychosis may be under-represented in co-production efforts. This scoping review aims to explore the peer-reviewed literature to better understand the processes and terminology employed, as well as the barriers, facilitators, and outcomes of co-production in psychosis research. Methods Three databases were searched (MEDLINE, EMBASE, PsycINFO) using terms and headings related to psychosis and co-production. All titles, abstracts and full texts were independently double-screened. Disagreements were resolved by consensus. Original research articles reporting on processes and methods of co-production involving adults with psychosis as well as barriers, facilitators, and/or outcomes of co-production were included. Data was extracted using a standardised template and synthesised narratively. Joanna Briggs Institute and the AGREE Reporting Checklist were used for quality assessment. Results The search returned 1243 references. Fifteen studies were included: five qualitative, two cross-sectional, and eight descriptive studies. Most studies took place in the UK, and all reported user involvement in the research process; however, the amount and methods of involvement varied greatly. Although all studies were required to satisfy INVOLVE (2018) principles of co-production to be included, seven were missing several of the key features of co-production and often used different terms to describe their collaborative approaches. Commonly reported outcomes included improvements in mutual engagement as well as depth of understanding and exploration. Key barriers were power differentials between researchers and service users and stigma. Key facilitators were stakeholder buy-in and effective communication. Conclusions The methodology, terminology and quality of the studies varied considerably; meanwhile, over-representation of UK studies suggests there may be even more heterogeneity in the global literature not captured by our review. This study makes recommendations for encouraging co-production and improving the reporting of co-produced research, while also identifying several limitations that could be improved upon for a more comprehensive review of the literature.

Introduction: Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results: Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion: Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review. [ABSTRACT FROM AUTHOR]

Although community engagement is now a widely accepted part of universities' agenda, the evidence of learning environments that allow students to gain new knowledge and skills through authentic partnership and reciprocity with community members remains sporadic. Guided by educational and community engagement scholarship, the study examined the involvement of community members in social work simulations at an Australian university. Based on reflexive thematic analysis of focus groups and interviews with community members and university staff who participated in social work simulations, four qualities of practice learning were identified: (1) the value of lived experience and expertise; (2) the importance of preparation for professional practice; (3) dedication of time and resources; and (4) guided by the impacts for community members. Taking a critical perspective, community-engaged teaching recognizes and values the communal aspects of knowing and learning, understood through an examination of teaching and learning and community engagement theory. [ABSTRACT FROM AUTHOR]

Background: There is increasing awareness of the potential for positive impacts on student learning from involving people with dementia and family carers within undergraduate teaching. However, research on the experience of people with dementia and their family carers is sparse. This study aimed to evaluate the satisfaction and views of families (people with dementia and their family carers) who volunteered in Time for Dementia (TFD); an educational programme where undergraduate healthcare students visit families at home over a 2-year period. Methods: Families taking part in TFD completed a satisfaction survey after taking part in the programme (n = 803). Frequencies of satisfaction survey items were summarised and multiple linear regression models for factors associated with total satisfaction scores were produced. Open text responses were analysed using thematic framework analysis as to the most favourable aspects of the programme and areas requiring improvement. Results: Overall satisfaction was high for taking part in TFD, with a perception of contribution, and being of value. There was strong evidence that families enjoyed the experience and would recommend participation to others. Higher numbers of student visits were significantly associated with greater satisfaction. Families identified aspects of the programme that benefited them, with social interaction rating highly. Improvements suggested by the families included increased visit structure and organisational improvements. Conclusions: This study has sought to evaluate at scale the satisfaction of families taking part in a dementia education programme. It is positive that families report high satisfaction in the programme and identify perceived value for themselves as well as students, suggesting reciprocal benefits. This study contributes to the broader understanding of what Experts by Experience value when taking part in educational interventions. [ABSTRACT FROM AUTHOR]

Introduction: Co-production is a collaborative approach to service user involvement in which users and researchers share power and responsibility in the research process. Although previous reviews have investigated co-production in mental health research, these do not typically focus on psychosis or severe mental health conditions. Meanwhile, people with psychosis may be under-represented in co-production efforts. This scoping review aims to explore the peer-reviewed literature to better understand the processes and terminology employed, as well as the barriers, facilitators, and outcomes of co-production in psychosis research. Methods: Three databases were searched (MEDLINE, EMBASE, PsycINFO) using terms and headings related to psychosis and co-production. All titles, abstracts and full texts were independently double-screened. Disagreements were resolved by consensus. Original research articles reporting on processes and methods of co-production involving adults with psychosis as well as barriers, facilitators, and/or outcomes of co-production were included. Data was extracted using a standardised template and synthesised narratively. Joanna Briggs Institute and the AGREE Reporting Checklist were used for quality assessment. Results: The search returned 1243 references. Fifteen studies were included: five qualitative, two cross-sectional, and eight descriptive studies. Most studies took place in the UK, and all reported user involvement in the research process; however, the amount and methods of involvement varied greatly. Although all studies were required to satisfy INVOLVE (2018) principles of co-production to be included, seven were missing several of the key features of co-production and often used different terms to describe their collaborative approaches. Commonly reported outcomes included improvements in mutual engagement as well as depth of understanding and exploration. Key barriers were power differentials between researchers and service users and stigma. Key facilitators were stakeholder buy-in and effective communication. Conclusions: The methodology, terminology and quality of the studies varied considerably; meanwhile, over-representation of UK studies suggests there may be even more heterogeneity in the global literature not captured by our review. This study makes recommendations for encouraging co-production and improving the reporting of co-produced research, while also identifying several limitations that could be improved upon for a more comprehensive review of the literature. [ABSTRACT FROM AUTHOR]

Within psychiatric research fields, there has been a marked uptick of interest in service user involvement in recent years. Nevertheless, it is often unclear how robust or impactful common forms of inclusion are, and the extent to which they have included individuals with psychosis. Using collective auto-ethnography, this paper describes the experiences of 8 academic and non-academic members of the 'lived experience' and participatory research workgroup of a global psychosis Commission and our navigation of power and power hierarchies, differences in background and training, and multiple vectors of identity, diversity, and privilege. We conclude that the realities of "involvement" are much messier, more fraught, and less intrinsically empowering than often signaled in calls for involvement and co-production. We nevertheless stress the power of collective dialogue and support—between and among a pluralistic group—and of honesty and transparency about challenges, barriers, and the colonial underpinnings and geopolitics of global mental health. [ABSTRACT FROM AUTHOR]

Abstract Background Different Early Intervention Psychosis Service (EIPS) models of care exist, but many rely upon community-based specialist clinical teams, often with other services providing psychosocial care. Time-limited EIPS care creates numerous service transitions that have potential to interrupt continuity of care. We explored with young people (YP) and their support people (SP) their experiences of these transitions, how they affected care and how they could be better managed. Methods Using purposive sampling, we recruited twenty-seven YP, all of whom had been hospitalised at some stage, and twelve SP (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration into secondary mental health care. Audio-recorded interviews were conducted face-to-face or via phone. A diverse research team (including lived experience, clinician and academic researchers) used an inductive thematic analysis process. Two researchers undertook iterative coding using NVivo12 software, themes were developed and refined in ongoing team discussion. Results The analysis identified four major service-related transitions in a YP’s journey with the EIPS that were described as reflecting critical moments of care, including: transitioning into EIPS; within service changes; transitioning in and out of hospital whilst in EIPS care; and, EIPS discharge. These service-related transition affected continuity of care, whilst within service changes, such as staff turnover, affected the consistency of care and could result in information asymmetry. At these transition points, continuity of care, ensuring service accessibility and flexibility, person centredness and undertake bio-psychosocial support and planning were recommended. State and federally funded services both had high levels of service satisfaction, however, there was evidence of higher staff turnover in federally funded services. Conclusion Service transitions were identified as vulnerable times in YP and SP continuity of care. Although these were often well supported by the EIPS, participants provided illustrative examples for service improvement. These included enhancing continuity and consistency of care, through informed and supportive handovers when staff changes occur, and collaborative planning with other services and the YP, particularly during critical change periods such as hospitalisation.

This paper presents a meta-analysis, drawing exclusively on qualitative research (n = 38), which contributes to findings on mental health service user experiences of received provisions and/or encounters in contemporary social and mental health services in the Nordic countries. The main objective is to identify facilitators of, and barriers to, various notions of service user involvement. Our findings provide empirical evidence regarding service users' experiences of participation in their encounters with mental health services. We identified two overarching themes, professional relations and the regulative framework and current rule and norm system, in the reviewed literature concerning facilitators and hindrances of user involvement in mental health services. By including the interrelated policy concept of 'active citizenship' and theoretical concept of 'epistemic (in)justice' in the analyses, the results provide foundations for broader exploration and problematization of the policy ideals of what we call 'epistemic citizenship' and contemporary practices in Nordic mental health organizations. Our conclusions include suggestions that linking micro-level experiences to organizational macro-level circumstances opens up avenues for further research on service user involvement. [ABSTRACT FROM AUTHOR]

The healthcare support needs of the lesbian, gay, bisexual (LGB) and transgender community are becoming an emerging area of healthcare research. Providing person-centred care is World Health Organisation policy and as such it is important that Radiography services can demonstrate areas in which they are working with people to design, develop and feedback on the services that they receive. This research aimed to establish how cancer treatment impacted on the identities of LGB people, their experiences of care, and their engagement with developing a practitioner guide. This cooperative inquiry is underpinned by person-centred philosophy and participatory research principles. Participants were nine lesbian, gay, and bisexual people affected by cancer. Each engaged in two facilitated, audio-recorded conversations to explore their experiences of cancer care. An analytical framework based on Mezirow's Transformational Theory was used to organise the data, followed by detailed content analysis to develop themes. Participants included men and women, aged 45–68, who had experienced different cancers. They explored how cancer treatment had impacted on them, and worked with the researcher and stakeholders to establish a seven-recommendation practitioner guide aimed at improving LGB people's care experiences. Their accounts revealed a broad range of issues that both corroborate and build on existing evidence. Themes highlighted expectations and experiences of both assumptions and prejudice in healthcare interactions. These experiences, along with misinterpretation of relationships with significant others, led to feelings of discomfort and reserve about self-expression. Findings of the research are presented in the following key areas: Dilemmas of attending oncology appointments; Inclusive experiences of care; and Formulation of the practitioner guide. The research findings enabled development of a national practitioner guide with the participants and key stakeholders to raise awareness of the needs of LGB persons affected by cancer and support better care. By providing real-life accounts this research adds to understanding of how LGB persons interact with services, developing evidence to support cultural competence within the profession of Radiography and oncology services more broadly. [ABSTRACT FROM AUTHOR]

It has become relatively common practice within health professional education to invite people who have used mental health and social care services (or service user educators) to share their stories with health professional learners and students. This paper reports on findings from a postcritical ethnographic study of the practice of service user involvement (SUI), in which we reflexively inquired into conceptualizations of service user educators' knowledge contributions to health professional education in the accounts of both service user- and health professional educators. This research was conducted in response to recent calls for greater scrutiny surrounding the risks, challenges, and complexities inherent in involving service users in health professional education spaces. 'Story/telling' was identified as a pronounced overarching construct in our analysis, which focuses on participants' reports of both the obvious and more subtle tensions and complexities they experience in relation to storytelling as a predominant tool or approach to SUI. Our findings are presented as three distinct, yet overlapping, themes related to these complexities or tensions: (a) performative expectations; (b) the invisible work of storytelling; and (c) broadening conceptualizations of service user educators' knowledge. Our findings and discussion contribute to a growing body of literature which problematizes the uncritical solicitation of service user educators' stories in health professional education and highlights the need for greater consideration of the emotional and epistemic labour expected of those who are invited to share their stories. This paper concludes with generative recommendations and reflexive prompts for health professional educators seeking to engage service user educators in health professional education through the practice of storytelling. [ABSTRACT FROM AUTHOR]

This paper presents a meta-analysis, drawing exclusively on qualitative research (n = 38), which contributes to findings on mental health service user experiences of received provisions and/or encounters in contemporary social and mental health services in the Nordic countries. The main objective is to identify facilitators of, and barriers to, various notions of service user involvement. Our findings provide empirical evidence regarding service users’ experiences of participation in their encounters with mental health services. We identified two overarching themes, professional relations and the regulative framework and current rule and norm system, in the reviewed literature concerning facilitators and hindrances of user involvement in mental health services. By including the interrelated policy concept of ‘active citizenship’ and theoretical concept of ‘epistemic (in)justice’ in the analyses, the results provide foundations for broader exploration and problematization of the policy ideals of what we call ‘epistemic citizenship’ and contemporary practices in Nordic mental health organizations. Our conclusions include suggestions that linking micro-level experiences to organizational macro-level circumstances opens up avenues for further research on service user involvement.

Background: Diabetes is a complex chronic health condition that can have a significant impact on physical health and psychological wellbeing. Diabetes management can be particularly difficult for young people (YP) with a diagnosis, and complications arising from poor diabetes self-care can be personally and economically costly. There are ongoing local and national priorities to improve diabetes care management (NHS England, 2016/2017) and streamline resources. A service evaluation was commissioned to understand YP's experiences of living with diabetes. Methods: A qualitative approach was used to elicit YP's (16-25) experiences of living with diabetes. Eight YP were interviewed using a semi-structured format. Results: Five themes were identified from the data: 1) Experience of diagnosis, 2) Day-to-day management, 3) Self-identity, 4) Interactions with staff and 5) Peer support. Conclusions: Overall, the findings of this evaluation indicated that YP found navigating and balancing the demands of diabetes and engagement in typical developmental activities a challenging process. These were sometimes at odds with the priorities of healthcare professionals (HCPs), and lead to differences in the perception of optimal diabetes management. This in turn often had a major impact on engagement and diabetes self-care. The evaluation identified that there is an important role for a psychology service to support the psychological wellbeing of YP with diabetes and to create a shared understanding between YP and HCPs to help increase engagement, collaboration and self-management. [ABSTRACT FROM AUTHOR]

Background: Different Early Intervention Psychosis Service (EIPS) models of care exist, but many rely upon community-based specialist clinical teams, often with other services providing psychosocial care. Time-limited EIPS care creates numerous service transitions that have potential to interrupt continuity of care. We explored with young people (YP) and their support people (SP) their experiences of these transitions, how they affected care and how they could be better managed. Methods: Using purposive sampling, we recruited twenty-seven YP, all of whom had been hospitalised at some stage, and twelve SP (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration into secondary mental health care. Audio-recorded interviews were conducted face-to-face or via phone. A diverse research team (including lived experience, clinician and academic researchers) used an inductive thematic analysis process. Two researchers undertook iterative coding using NVivo12 software, themes were developed and refined in ongoing team discussion. Results: The analysis identified four major service-related transitions in a YP's journey with the EIPS that were described as reflecting critical moments of care, including: transitioning into EIPS; within service changes; transitioning in and out of hospital whilst in EIPS care; and, EIPS discharge. These service-related transition affected continuity of care, whilst within service changes, such as staff turnover, affected the consistency of care and could result in information asymmetry. At these transition points, continuity of care, ensuring service accessibility and flexibility, person centredness and undertake bio-psychosocial support and planning were recommended. State and federally funded services both had high levels of service satisfaction, however, there was evidence of higher staff turnover in federally funded services. Conclusion: Service transitions were identified as vulnerable times in YP and SP continuity of care. Although these were often well supported by the EIPS, participants provided illustrative examples for service improvement. These included enhancing continuity and consistency of care, through informed and supportive handovers when staff changes occur, and collaborative planning with other services and the YP, particularly during critical change periods such as hospitalisation. [ABSTRACT FROM AUTHOR]

Service user and carer involvement in social work education is well established in the UK and other countries. There has however been limited research on the outcomes of this for social work practice and its subsequent impact on service users and carers. This has been noted in a previous systematic review involving one of the current authors. The current review aimed to synthesise literature from the previous decade (2011–2020) and follows on from the earlier review. PRISMA scoping review guidelines were followed and twenty-eight papers met the inclusion criteria that were framed. Data were extracted and tabulated according to the framework for the evaluation of educational programmes used in the previous review and analysed using narrative synthesis. A ten-item critical appraisal checklist was used to assess the rigour of all papers. The findings were similar to the earlier review. Most studies were from the UK and few evaluated change in students' skills or subsequent practice; none evaluated subsequent outcomes for service users and carers. All stakeholders were positive about the perceived benefits of service user and care involvement. Future research needs to use more robust evaluation methodologies and evaluate skills development for students and outcomes for service users and carers. [ABSTRACT FROM AUTHOR]

Men who use intimate partner violence (IPV) are often excluded from service user involvement approaches, including those provided in social work education. This article outlines Australian research in which men who use IPV developed a learning resource, the resource was shown to social work students and student feedback sought through pre- and post-test questionnaires and group discussion. Students reported increased knowledge regarding interpersonal violence, greater awareness of the skills required to engage service users who use IPV and willingness to work alongside service users who are involuntary and/or have multiple issues in future social work placements and practice. The findings suggest, when risks are well managed, it may be possible to incorporate the lived experiences of men who use IPV in social work education with positive benefit for student learning. The ramifications of these findings for social work education and practice internationally are discussed. [ABSTRACT FROM AUTHOR]

Initiatives that attribute expert status to 'ordinary citizens' proliferate in a range of societal realms and are generally celebrated for 'democratising expertise'. By tapping new sources of knowledge and participation simultaneously, such 'citizen expertise' practices seem to provide responses to the contemporary decline of trust in political elites and traditional experts that seriously challenges the legitimacy of democratic policy-making. This study distinguishes between three quintessential types of citizen expertise ('local knowledge', 'service user involvement' and 'citizen science') and, from an integrated perspective, critically discusses the value of citizen expertise for public knowledge production and democratic governance. Drawing on empirical insights and on theories of democracy and of expertise and knowledge, the concepts of expertise and participation are refined and quality conditions of citizen expertise are developed. The study argues that citizen expertise is epistemically particularly valuable when it is based on distinct, non-ubiquitous experiences and on collective, not just individual, insights. It contends that representativeness is key to the democratic legitimacy of citizen experts in the policy context and points to the key role of organised civil society in establishing the required accountability relationships. [ABSTRACT FROM AUTHOR]

Copyright of China Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract Objectives There is growing policy impetus for including youth voices in health services research and health system reform. This article examines the perspectives of professionals in a mental healthcare organization charged with engaging young people as advisors in service transformation. Methods An institutional ethnography of a youth mental health services organization in Ontario, Canada, was conducted. Fieldwork consisted of twelve months of observation of meetings, interviews with youth advisors and adult service providers, with subsequent text analysis of engagement training and policy materials. The present article reports data from six adult professionals and related field observations. Results Service providers’ efforts to engage youth were observed in three areas: a) supporting youth's development as advisors, b) retaining and deepening youth participation while waiting for organizational change and c) embedding relationships between youth and adults at various levels within the system of care. This work denotes existing tensions between the values and ideals of youth engagement and the everyday demands of services delivery. Conclusion In this setting, a fundamental dimension of this work consisted of negotiating tensions between the policy enthusiasm for engagement and its realization in a health services context. In describing these contextual challenges, we outline implications for consideration by other youth mental health services. Engagement efforts that are authentic and sustained require resources and flexibility, and leadership commitment to instil service users’ perspectives throughout multiple levels within the organization.

The mental health benefits of physical activity and exercise are well‐documented and asylum seekers who may have poor mental health could benefit from undertaking recommended levels of physical activity or exercise. Digital mobile applications are increasingly seen as feasible to precipitate behaviour change and could be a means to encourage asylum seekers to increase their levels of physical activity and exercise. This paper reports on a study that aimed to assess the feasibility of asylum seekers using the digital animation as a tool to change behaviour and increase their physical activity and exercise levels. A feasibility study underpinned by the principles of the COM‐B behaviour change model was undertaken in West Yorkshire, UK, in 2019. Thirty participants were purposively recruited and interviewed. Peer interpreters were used as necessary. Deductive thematic analysis was undertaken to analyse the data. Overall, participants were positive about the feasibility of asylum seekers using the application as a behaviour change intervention. All expressed the view that it was easy to follow and would motivate them to increase their physical activity levels. Participants identified facilitators to this as the simplicity of the key messages, the cultural neutrality of the graphics and the availability of the mobile application in different languages. Identified barriers related to the dialect and accents in the translations and the over‐simplicity of the application. This study has identified that a targeted digital animation intervention could help asylum seekers change their behaviour and hence improve their health and well‐being. In designing such interventions, however, researchers must strongly consider co‐design from an early stage as this is an important way to ensure that the development of an intervention is fit for purpose for different groups. [ABSTRACT FROM AUTHOR]

Understanding of the benefits of consumer-led health policy, practice, research and education has been developing for decades. However, barriers to genuine, non-tokenistic consumer leadership remain across the health sector. While recent calls to align Australian consumer engagement practices with those in the UK and elsewhere may sound progressive, doing so would be problematic for three reasons. First, Australia has been at the forefront of consumer leadership scholarship and advocacy for decades, and we should not ignore the work consumers and allies have done in improving our health systems. Second, although there have been positive outcomes from consumer engagement and inclusion practices (as often required in other jurisdictions), they are open to tokenism and continue to position consumers' experiential expertise as 'lesser' compared to other health sector stakeholders' knowledge. Last, compared to consumer leadership, engagement or inclusion are 'lower bars' for health professionals to aim for. If we settle for engagement or inclusion in cases where consumer leadership would have been possible, then we lose not only our position at the forefront of consumer leadership, but also the expertise of consumers. Three propositions are provided: (1) we should support consumer-led development policy for consumer leadership in health, (2) we should ensure consumer leadership in oversight over as well as conduct of health and medical research, (3) we should encourage honest claims about the extent to which projects or initiatives are led by or with consumers. What is known about the topic? Health policy, practice, research and education led by consumers benefits from their experiential expertise. What does this paper add? We should be careful of settling for consumer engagement or involvement, and continue pushing for consumer leadership to realise these benefits. What are the implications for practitioners? The health sector should make space for consumer leadership across initiatives, services and systems. Our health systems should enable us to foster non-tokenistic partnerships with consumers and engage only in honest reporting about the level of involvement of consumers in research. [ABSTRACT FROM AUTHOR]

The involvement of service users and carers is mandated in the development and delivery of social work education since 2002. At our university we have a very active group of six Service User and Carer Involvement (SUCI) experts who contribute to all aspects of the undergraduate and post graduate qualifying social work programmes. Six SUCI experts participated in a workshop to explore their lived experience of involvement in social work education. Qualitative data was recorded with permission and later transcribed as the participants discussed their perspectives of involvement in the programmes. Themes were co-created during the workshop and captured on a whiteboard; this was later photographed. Thematic data analysis was also applied to the discussion. Themes co-created in this study were identified as: expertise; motivations; authenticity; diversity; challenging students; enablers and barriers; and areas for improvement. The SUCI experts noted their sense of cohesion and team support as a group which was essential to their positive experiences of involvement; and identified their motivations for involvement which encourages them to challenge students to improve their practice. Moving forward we are committed to exploring how we can ensure effective involvement by developing co-production and ensuring the effective and creative involvement of the group. [ABSTRACT FROM AUTHOR]

This study evaluates the implementation of a national advocacy programme for mental health care users, conducted by the South African National Department of Health and the South African Federation for Mental Health. Semi-structured interviews were conducted with care users (n = 18), service providers (n = 9), support persons (n = 6), NGO directors (n = 4), and programme managers in the DoH (n = 4). Although informational benefits were highlighted from programme empowerment sessions, very few advocacy groups were subsequently established. Barriers to establishing and conducting advocacy groups included a lack of follow-up support, pervasive stigma from communities and health care workers, low self-confidence, and a lack of financial resources. Facilitators for establishment of groups included conducting empowerment sessions and identifying 'mental health champions' at clinics, improving mental health training for health workers, dispensing psychiatric medication to patients on the same day, providing funding for non-governmental organisations, conducting national awareness campaigns, and establishing holistic rehabilitation centres for care users. [ABSTRACT FROM AUTHOR]

Copyright of Ljetopis Socijalnog Rada / Annual of Social Work is the property of Pravni Fakultet Sveucilista u Zagrebu, Studijski Centar Socijalnog Rada and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs.Objectives: To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals.Methods: Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16-29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis.Results: We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions.Conclusions: This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects. [ABSTRACT FROM AUTHOR]

Abstract We explore the shift from desk to digital services in the Norwegian Labour and Welfare Administration (NAV). This organizational shift is part of the “Channel Strategy”, which aims to route service users through multiple choices of media channel in NAV. The research question is: How do NAV service users with mental health challenges and co-occurring disorders experience the digitalization of NAV’s services? Our methodological framework is a bottom-up perspective. Our empirical sample consists of qualitative interviews with 25 service users with co-occurring disorders and challenges with mental health problems who have extensive knowledge of and experience using NAV’s services. The findings indicate a shift towards what we have termed “faceless interaction”, which refers to interactions related to users, frontline workers and the welfare system, as well as to how users respond to mediation in a digital context. In this integrated circuit, humans are responding to the terms set by technology; human interaction related to user involvement and responsibility is less prominent. The conclusion indicates that a shift towards digital social services in NAV requires new forms of skill and communication among both frontline workers in NAV and users with mental health challenges and co-occurring disorders.

Abstract Background The involvement of service users and caregivers is recommended as a strategy to strengthen health systems and scale up quality mental healthcare equitably, particularly in low-and-middle-income countries. Service user and caregiver involvement is complex, and its meaningful implementation seems to be a worldwide challenge. Theory of Change (ToC) has been recommended to guide the development, implementation and evaluation of such complex interventions. This paper aims to describe a ToC model for service user and caregiver involvement in a primary mental health care in rural Ethiopia. Methods The ToC was developed in two workshops conducted in (i) Addis Ababa with purposively selected psychiatrists (n = 4) and multidisciplinary researchers (n = 3), and (ii) a rural district in south-central Ethiopia (Sodo), with community stakeholders (n = 24). Information from the workshops (provisional ToC maps, minutes, audio recordings), and inputs from a previous qualitative study were triangulated to develop the detailed ToC map. This ToC map was further refined with written feedback and further consultative meetings with the research team (n = 6) and community stakeholders (n = 35). Results The experiential knowledge and professional expertise of ToC participants combined to produce a ToC map that incorporated key components (community, health organisation, service user and caregiver), necessary interventions, preconditions, assumptions and indicators towards the long-term outcomes. The participatory nature of ToC by itself raised awareness of the possibilities for servicer user and caregiver involvement, promoted co-working and stimulated immediate commitments to mobilise support for a grass roots service user organization. Conclusions The ToC workshops provided an opportunity to co-produce a ToC for service user and caregiver involvement in mental health system strengthening linked to the planned model for scale-up of mental health care in Ethiopia. The next steps will be to pilot a multi-faceted intervention based on the ToC and link locally generated evidence to published evidence and theories to refine the ToC for broader transferability to other mental health settings.