'ALL ABOUT MY IDEAL MENTAL HEALTH SERVICE': Users, family members and experts by experience discussing a co-designed service.

INTRODUCTION: Many studies have investigated patients' understandings of how to optimise mental health services. However, only a few studies in the Italian context have involved experts by experience (EbEs), who can be ex-users, family members of ex-users or current service collaborators. Their role is crucial in implementing collaborative service quality assessment projects. METHOD: The study investigated the experience of 35 EbEs,  users, and family members who carried out a 9-month fortnightly project aimed at imagining an 'ideal service'. The facilitators of the discussion groups (two EbEs) were interviewed; written reports of each meeting were produced with relevant comments, notes and specific suggestions; and content analysis was applied. RESULTS: The most important result concerns the effectiveness of the project management method and group leadership carried out by the two EbEs. This approach allowed for complete autonomy of the work, without professional gaze or power imbalance. Also, the ideas and specific contents focused on by the two groups offer strategies to facilitate users' entry and reception in health care centres, to reduce the stigma of mental illness, to improve the centres' physical environment, to improve organisational aspects, to keep family members actively involved and to network mental health services with other territorial services. CONCLUSIONS: EbEs have proven to be key figures in ensuring equity of role in the service co-design process. This also concerns a context, the Italian one, where their role has not yet been recognised and legalised. Their contribution and ideas to improve services could be fundamental not only in mental health centres, but also in other health facilities, and could concern the entire service delivery process rather than being limited to quality assurance, according to a virtuous circle based on active participation and transformation of the role of users. PATIENT OR PUBLIC CONTRIBUTION: This work resulted from close collaboration between the two EbEs who conducted the groups, users and family members, the university, and the psychiatrist in charge of the service. All of them contributed to the research. The EbEs, researchers and psychiatrist participated in the interpretation of the data and are the co-authors of this paper.

The value of experts by experience in social domain supervision in the Netherlands: results from a 'mystery guests' project.

BACKGROUND: User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the inspectorate, empowers users and enhancing the public's trust in the inspectorate. To assess the accessibility of the local governmental social domain services the Joint Inspectorate Social Domain in the Netherlands worked together with people with intellectual disabilities performing as 'mystery guests' in an innovative project. This paper describes the findings of the evaluation of this project. METHODS: People with intellectual disabilities living at home on their own may need some help with daily activities such as administrative tasks, raising children, household tasks, managing debts or finding work. In the Netherlands they have to arrange this help at their municipality. The goal of this project was to find out how easily people with intellectual disabilities could get help from their municipality. The participants were equal partners with the JISD inspectors from the beginning: in constructing an inspection framework, in acting as mystery guest with a fictive support request, reported back the results by storytelling. RESULTS: The evaluation of the project showed that the JISD succeeded in their key aspect of the project: the goal to involve people with intellectual disabilities in a leading role from the beginning until the end. Their perspectives and preferences were the starting point of supervision. Pain points in accessibility became clear straight away and gave important insights for both inspectors as municipality professionals. Municipalities started to improve their services and evaluated the improvements with the clients. Furthermore, the impact on the participants themselves was also huge: they felt being taken seriously, valued and empowered. CONCLUSION: Involving people with intellectual disabilities as participants in all phases of supervision processes contributes to more relevant and useful outcomes, creates mutual understanding of perspectives, as affirmed by both municipalities and inspectors, and creates empowerment of the participants. Furthermore, it fits perfectly within the United Nation Convention on the rights of persons with disabilities and the current development of 'value driven regulation'.

Acting as a Mental Health Expert by Experience and Its Impact on Social Identity.

This study was conducted to examine the construction of social identity among mental health experts by experience working in Finnish municipal mental healthcare services. The construction of social identity is approached as an ongoing lifelong process that is significantly affected by lived experiences with mental health problems and recovery from them. The research data consist of focus group discussions, and the analysis is based on a thematic design that is initially material-driven. As a result, four categories are formed to describe the effect of acting as an expert by experience on social identity and the importance of the issue. Experts by experience have to consider profound questions about their identity and future in their new life situation. The individual meanings of acting as an expert by experience are considered particularly important. The support provided by group members builds confidence in one's chances of success and thereby supports the development of social identity. Social identities of experts by experience are partially built in encounters with professionals representing the mental health care system. This creates opportunities for new roles for those who act as experts by experience.

The impact of expert by experience involvement in teaching in a DClinPsych programme; for trainees and experts by experience.

INTRODUCTION: There is a growing acknowledgement of the value of creating partnerships between those delivering and those accessing health services. Less is known about this in the context of clinical psychology doctoral training programmes. This study explores the models of involvement of experts by experience (EbEs) in teaching on a DClinPsych course in England; the impact of this both for EbEs and trainee clinical psychologists and whether improvements are required to better meet their needs. METHODS: An audit of current involvement was conducted by reviewing course records. Two survey questionnaires designed around commonly used frameworks of participation and reflective learning were completed by EbEs and trainees. Thematic Analysis was used to evaluate the written feedback from the surveys. RESULTS: Records of current EbE involvement were found to be lacking in detail and sometimes missing. Key themes extrapolated from the surveys highlighted the importance of EbE involvement in supporting the wellbeing of EbEs and the learning experiences of trainees. CONCLUSIONS: Recommendations with regard to the processes for future involvement of EbEs in teaching are put forward. PATIENT OR PUBLIC CONTRIBUTION: A carer of a service user was consulted about the design of the participant information sheet, consent form and the survey questionnaire which was sent to the EbEs. A trainee clinical psychologist was also consulted to provide a trainee perspective on the above forms and the survey questionnaire that was sent to trainees. Further to this, the first author's supervisor identifies as a user of physical and mental health services and provided continued supervision and support regarding the direction of the study including the research questions, design, methodology and interpretation of results.

Facilitators and Challenges of Integrating Experts by Experience Activity in Mental Health Services: Experiences from Finland.

This qualitative study examines the facilitators and challenges of integrating Experts by Experience (EbyE) activity in mental health services in the public sector from the perspective of mental health professionals and trained EbyE. The research data consist of four focus group interviews conducted in one hospital district in Finland. In the hospital district, EbyE activity is an established working model in mental health services. The professional focus groups had 9, and the EbyE focus groups had 13 participants. The data were analysed using abductive content analysis. The experiences of professionals and EbyE emphasised the successful integration of EbyE activity. The identified facilitators of integration included an organisational culture that values EbyE activity, facilitating operating structures, and extensive implementation and utilization of EbyE activities. Despite successful integration, certain challenges were described with regard to actors and practices. The findings indicate that the hospital district has overcome many of the obstacles to the integration identified in previous studies. The findings highlight the role of effectively implemented, organised EbyE activity.

Changing 'the world for the better': motivations of mental health academics for supporting expert by experience roles in mental health education.

BACKGROUND: Despite demonstrating positive outcomes in education, academic positions for Experts by Experience in mental health have not been widely implemented. To date positions have been driven by individual champions (allies). Their motivation for this support has not yet been researched. AIMS: To deepen understanding of motivations of mental health academics who have championed and supported implementation of EBE positions. METHODS: A Qualitative exploratory, study was undertaken involving in-depth individual interviews with 16 academics with experience of actively supporting the implementation of Expert by Experience positions in academia. Data were analysed independently by two researchers using a structured thematic framework. RESULTS: Motivations commonly arose from allies' own experiences of working with or exposure to Experts by Experience. Other motivating factors included: belief in the value of specific knowledge and expertise Experts by Experience contributed to mental health education; and, identifying the essential role Experts by Experience play in meeting policy expectations, and the broader philosophy of the university. CONCLUSIONS: The motivations identified by allies in this study have implications for Expert by Experience roles. Deeper understanding of motivations to support these roles is essential to arguing for their value, and ultimately producing positive outcomes in the education of health professionals.

What adults with ADHD want to know: A Delphi consensus study on the psychoeducational needs of experts by experience.

INTRODUCTION: A lack of knowledge about attention-deficit/hyperactivity disorder (ADHD) can contribute to feelings of distress and difficulty in seeking and accepting an ADHD diagnosis. The present study uses a Delphi consensus design to investigate the psychoeducational needs of adults with ADHD and the information about ADHD they would like included in digital health interventions for adults with ADHD. Inclusion of perspectives of service users in developing such interventions ensures that they are evidence based and addresses the risks of engagement barriers. METHODS: The expert panel consisted of 43 adults with ADHD (age range: 23-67 years). Panel members were asked to rate the importance of the proposed topics and provide additional suggestions. Suggested topics and topics that did not achieve consensus were included for ranking in the second round. RESULTS: Interquartile ratings were used to determine consensus. A high consensus was achieved in both rounds, with an agreement on 94% of topics in the first round and 98% in the second round. Most topics were rated as important or essential. CONCLUSIONS: The findings highlighted that adults with ADHD want to learn about many different aspects of ADHD and the importance of considering their perspectives when developing psychosocial interventions. Findings can be applied when creating psychoeducational content for adult ADHD. PATIENT OR PUBLIC CONTRIBUTION: Adults with ADHD were recruited to the Delphi panel to use an experts-by-experience approach. In doing so, we are engaging service users in the development of a psychoeducational smartphone app. The evaluation of the app will involve interviews with app users. Additionally, the present study was developed and conducted with ADHD Ireland, a charity based in Ireland that advocates for people with ADHD.

Expert by Experience engagement in gambling reform: qualitative study of gamblers in the United Kingdom.

To explore how Experts by Experience (EbyE) conceptualize key priorities for preventing and reducing gambling-related harm in the United Kingdom (UK). To identify barriers and facilitators to EbyE engagement in decisions for gambling research, education, treatment (RET) and policy development. Qualitative study utilizing semi-structured interviews with 20 participants from the UK between March and July 2020. Gamblers aged 29-60 years who self-reported that they had experienced gambling-related harm, and who actively used their experiences to inform strategies to prevent and reduce gambling-related harm in the UK. Participants were motivated to: advocate for gambling reform, and raise awareness of their experiences of gambling addiction or disorder. Gambling regulation was described as not adequately keeping pace with gambling industry practices, with initiatives needed to prevent the harms associated with product design, how individuals engaged with products and marketing practices. The reliance on voluntary contributions by the gambling industry for RET was perceived as a potential barrier to reform. Participants recommended new independent structures which engaged EbyE in meaningful ways in contributing to decision-making. An independent body run by and for EbyE was one mechanism that participants perceived could represent the voices of those impacted by gambling-related harm. Individuals with a lived experience of gambling-related harm, including affected social network members, bring a range of unique experiences and perspectives, and should be seen as valuable stakeholders in co-producing strategies to prevent and reduce gambling-related harm.

The focus of this study was to understand the key priorities for preventing and reducing gambling-related harm in the United Kingdom (UK), and the barriers and facilitators to engage individuals with a lived experience of gambling-related harm who are Experts by Experience (EbyE) in the development of gambling research, education, treatment (RET) and policy. The study interviewed EbyE gamblers aged 18 years and older from the UK between March and July 2020, who self-reported they had experienced gambling-related harm, and who had actively used their voice to highlight strategies to prevent and reduce gambling-related harm. Participants recommended strategies to prevent harms associated with gambling products and how individuals interacted with products, and restrictions to gambling marketing. A key barrier to achieving gambling reform was a lack of independent funding structures for gambling (RET). Participants recommended the formation of an independent body free of gambling industry funding and influence, run by and for EbyE (including social network members) to advise on gambling RET, policy and reform initiatives. There should be meaningful structures to engage EbyE (including social network members) in the development of gambling RET and policy. Their unique insights and experiences should be supported and empowered.

Learning from lived experience: Outcomes associated with students' involvement in co-designed and co-delivered recovery-oriented practice workshops.

INTRODUCTION: Learning from individuals with lived experience is considered an important element of developing recovery-oriented practice capabilities in mental health contexts. Additionally, service user involvement in the education of occupational therapy students is a requirement in accreditation standards. Despite this, many barriers to meaningful inclusion of Lived Experience Educators have previously been identified. METHOD: This study evaluated the outcomes achieved by students who were involved in a unit of study that incorporated four recovery-oriented practice workshops that were co-designed and co-delivered by Lived Experience Educators and an occupational therapy academic. Change over time was measured using the Recovery Knowledge Inventory (RKI) and the Capabilities for Recovery Oriented Practice Questionnaire (CROP-Q). Change over time was evaluated using paired t-tests. Students also provided qualitative feedback at the conclusion of the workshops. These comments were analysed using interpretive content analysis. RESULTS: Students' scores on the RKI and CROP-Q both demonstrated statistically significant improvements from the beginning of the semester to the end of semester (RKI: 53.6-57.7, t = 6.3, P < 0.001; CROP-Q: 75.6-77.0, t = 2.4, P = 0.019). The most common categories included in the qualitative comments were: "Learning from real experiences"; "Learning about how to be a better clinician"; "See the strength and resilience of the educators, reduce stigma"; "Learning about the negative aspects of the mental health system"; and "More effective than other types of learning". CONCLUSION: This study has demonstrated that students who engaged with the co-designed and co-delivered workshops improved their recovery knowledge and recovery-oriented capabilities over the course of the semester. Qualitative feedback also suggests that students' attitudes and skills for future practice were also influenced in positive ways by engaging with Lived Experience Educators.

'What's she doing here?' Overcoming barriers to the implementation of Expert by Experience positions in academia.

INTRODUCTION: Experts by Experience involvement in the education of health professionals has gained momentum as an important strategy in ensuring quality, person-centred education. Despite being a requirement for occupational therapy programs in Australia and internationally, involvement is variable and limited. Barriers to the implementation of academic roles have been identified, including negative attitudes of colleagues, systemic barriers, and insufficient evidence of their value. Mental health academics who do not identify as having lived experience (referred to as allies) have provided crucial support for Experts by Experience. Understanding their perspectives on implementation barriers and how they can be addressed is crucial to facilitating a broader level of meaningful involvement. METHODS: A qualitative exploratory research project was conducted, involving in-depth interviews with mental health academic allies (n = 16) from Australia, Ireland, and New Zealand. Participants were from the disciplines of nursing, occupational therapy, social work, and psychiatry. Data were analysed thematically. FINDINGS: Two main themes were identified from the data analysis process: convincing colleagues and dealing with university barriers. Participants described varying attitudes from colleagues towards Experts by Experience, with many not understanding or appreciating their contribution to education and student outcomes. At the university level, reluctance to embrace innovation and funding and other resource shortages presented impediments to the implementation of Expert by Experience roles. Participants described using creative measures to overcome institutional barriers and encourage greater acceptance of such roles by colleagues. CONCLUSION: This research describes how allies experienced and overcame barriers they faced when supporting the implementation of academic positions for Experts by Experience. Allies have an important role to play in overcoming systemic barriers, and the approaches they have taken to achieve this may be an important source of learning for others with similar aspirations.

Psychiatry and neurodevelopmental disorders: experts by experience, clinical care and research.

People with neurodevelopmental disorders often present with challenging behaviours and psychiatric illnesses. Diagnosis and treatment require patients, families and healthcare professionals to work closely together in partnership, acknowledging their respective areas of expertise. Good treatment outcomes should also be underpinned by robust research evidence. Key research priorities are highlighted.

"But I'm not going to be a mental health nurse": nursing students' perceptions of the influence of experts by experience on their attitudes to mental health nursing.

BACKGROUND: Mental health nursing skills and knowledge are vital for the provision of high-quality healthcare across all settings. Negative attitudes of nurses, towards both mental illness and mental health nursing as a profession, limit recognition of the value of these skills and knowledge. Experts by Experience have a significant role in enhancing mental health nursing education. The impact of this involvement on attitudes to mental health nursing has not been well researched. AIM: To explore the impact of Expert by Experience-led teaching on students' perceptions of mental health nursing. METHODS: Qualitative exploratory study involving focus groups with nursing students from five European countries and Australia. RESULTS: Following Expert by Experience-led teaching, participants described more positive views towards mental health nursing skills and knowledge in three main ways: learning that mental health is everywhere, becoming better practitioners, and better appreciation of mental health nursing. CONCLUSIONS: Experts by experience contribute to promoting positive attitudinal change in nursing students towards mental health nursing skills and knowledge. Attitudinal change is essential for the provision of high-quality mental health care in specialist mental health services and throughout the healthcare sector.

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya.

BACKGROUND: The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect - education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability? METHODS: A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members' personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method. RESULTS: The emergent framework consisted of four main themes, organised as opposing constructs: 'burden' and 'agency', 'sub-human' and 'human'. 'Burden' focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the 'agency' of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The 'sub-human' to 'human' construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings. CONCLUSION: This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions.

'We only come from one perspective': Exploring experiences of allies supporting expert by experience leadership in mental health education.

INTRODUCTION: Academics from health professional backgrounds have a crucial role in supporting the implementation and sustainability of academic positions for experts by experience in mental health education. Perspectives and experiences of these academics have yet to be extensively explored. A deeper understanding will add to our understanding of this important role and provide guidance for academics with similar aspirations. AIM: The aim of the study was to explore the experiences of supporting academic positions for experts by experience in mental health education. METHODS: A qualitative exploratory design was utilised. In-depth interviews were conducted with academics who have actively supported academic positions for experts by experience. RESULTS: Allyship was a key theme identified. Participants described allyship as complex, time-consuming and rewarding, through three sub-themes: the tension of allyship, the impact of being an ally and interpersonal and relational issues with health professional academics. CONCLUSIONS: Allyship was influenced by the negative attitudes of many health professional academics, who do not appreciate the value of this work. IMPLICATIONS FOR PRACTICE: Allyship has a crucial role in enhancing experts by experience leadership in the education of health professionals. Understanding the experience of allyship will assist in further understanding and developing these important roles.

Considerations for peer research and implications for mental health professionals: learning from research on food insecurity and severe mental illness.

WHAT IS KNOWN ON THE SUBJECT: Peer research methodologies and methods are increasingly used in research, particularly to benefit from lived experiences. The experiences of peer researchers with severe mental illness are less common, including the impact on them of conducting peer-led research. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: This paper shares the experience of peer research and suggests in the context of food insecurity, that it is not well understood by some healthcare professionals. WHAT ARE THE IMPLICATIONS FOR PRACTICE: Implications include considerations around trauma-informed care and the need for screening for food insecurity in mental healthcare settings. Research implications include providing training for peer research and needing to consider longevity of peer researcher relationships. ABSTRACT: Introduction Food insecurity means that a person does not have access to sufficient nutritious food for normal growth and health. This can lead to health problems such as obesity, heart disease, diabetes and other long term chronic health conditions. People living with a severe mental illness are more likely to experience food insecurity than people without a severe mental illness. Aim The aim of this paper is to present a lived experience narrative of two peer researchers. Peer researchers conducted interviews with adults with severe mental illness from Northern England as part of a funded research project. These interviews discussed experiences of food insecurity and strategies to tackle it and were conducted between March and December 2022. Thesis The following paper does not discuss the results of the interviews themselves. Rather the narrative begins with an overview of peer research, before sharing the experiences of the two peer researchers in undertaking this project. Implications for Practice This includes healthcare professionals understanding food insecurity, what it is and what it is not, thinking about trauma-informed care, and screening for food insecurity. Peer research implications centre on adequate support and training, considerations to longevity of peer research relationships and reducing unnecessary research burden for peer researchers.

It takes it out of the textbook: Benefits of and barriers to expert by experience involvement in pre-registration mental health nursing education.

WHAT IS KNOWN ON THE SUBJECT?: Service user involvement in mental health nursing education is beneficial in terms of attitudinal change to reduce stigma, clinical skill development and enhancing understandings of recovery-oriented practice. Service users as experts by experience have not been embedded within pre-registration nursing programs. Consequently, they remain limited in number, ad hoc and frequently tokenistic. Nurse academics responsible for the design and delivery of pre-registration mental health nursing curricula have a potentially important role in facilitating expert by experience involvement in mental health nursing education. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: Nurse academics teaching mental health nursing have generally favourable views about the importance of expert by experience involvement. Nurse academics experience significant barriers in supporting the implementation of academic positions for experts by experience, particularly in obtaining funding. The experts by experience could contribute to mental health nursing education does not appear to be clearly understood by nurse academics. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Mental health services aspire to adopt a recovery-oriented approach to practice. Involving experts by experience in mental health nursing education can facilitate increased understanding and appreciation of recovery-oriented practice. Nurse academics could play an important role in supporting the implementation of experts by experience positions in nursing academia. To do so, they require an understanding of the benefits of EBE involvement in academia and the barriers that can be encountered when attempting to facilitate the implementation of such positions. Experts by experience contribute unique expertise, essential to the development of quality mental health services. Conveying this expertise through the educating the future nursing workforce in mental health is essential. ABSTRACT: INTRODUCTION: Involving service users in mental health nursing education is ad hoc and minimal, despite growing evidence of its benefits. Insights and experiences of nurse academics teaching mental health to pre-registration students have been underrepresented in the research to date. AIM: To seek insights and experiences of nurse academics involved in designing and delivering pre-registration mental health nursing education in Australian universities regarding involving service users in mental health nursing education. METHODS: A descriptive qualitative study involving 19 nurse academics from 13 Australian universities, involved in pre-registration mental health nursing education. Data were analysed thematically. RESULTS: Participants reported minimal service user involvement. Most sought an increase and identified barriers. Data analysis resulted in five identified themes: (1) value-rich, (2) resource-poor, (3) imperfect processes, (4) 'part, but not all' and (5) unrecognised worth. CONCLUSIONS: Increasing meaningful involvement of service-users in mental health nursing education requires support and investment from multiple stakeholders. Nurse academics are crucial stakeholders in understanding the unique expertise service users bring. IMPLICATIONS FOR PRACTICE: Service users being central to all aspects of mental health services requires their active participation in the education of health professionals. Nurse academics have an important role in realising this goal.

Building a specialized model of care for youth involved in sex trafficking in child welfare: A systematic review and interviews with experts-by-experience.

BACKGROUND: Sex trafficking of youth involved in the child welfare system is a critical global issue; however, there are limited counter-trafficking programs designed to specifically meet the needs of this population. OBJECTIVE: The present study aimed to identify components essential to building a model of care for youth involved in sex trafficking in child welfare. The specific goals of this investigation were to: 1) systematically review the literature for programs implemented with child-welfare involved youth at risk of or involved in sex trafficking, and 2) examine convergent and divergent evidence through interviews with experts-by-experience (i.e., survivors and child welfare personnel). PARTICIPANTS AND SETTING: 13 child welfare workers and 6 survivors of sex trafficking. METHODS: Systematic review identified articles that included programs and interventions for youth involved in sex trafficking in child welfare. Interviews with experts-by-experience were analysed through reflexive thematic analysis. Content analysis was used to examine convergent and divergent evidence between the two noted methods of inquiry (systematic review and interviews with experts). RESULTS: Findings from the systematic review support a model of care comprised of two overarching components: 1) wraparound supports, and 2) trained caregivers and supported foster homes. Thematic analyses also revealed that experts thought that an appropriate model of care would require child welfare agencies to take a preventative stance, such as conducting early coordinated risk assessments on all youth in care. Convergent with the literature, experts noted the need for enhanced wraparound supports and specific training for caregivers and service providers. CONCLUSIONS: Components essential to building a model of care for youth at risk of or involved in sex trafficking in child welfare were extracted and discussed based on the evidence gathered.

Formation of a stakeholder group of women with a lived experience of Post-partum Psychoses (PP) - Experience from a perinatal psychiatry service in India.

Our paper describes the process of creating a stakeholder group for service development and research in Postpartum Psychosis (PP) at a Perinatal Psychiatry Service in India. We involved women who have recovered from PP as `experts by experience' in identifying areas that need attention from a research and service perspectives. A total of 13 group meetings were conducted, in which 9 group meetings involved women with lived experiences of PP and 4 group meetings were with the family members involved in the care of women during the PP episode. Of the 58 participants, 23 women and two family members expressed their willingness to participate in future stakeholder meetings. Involvement of women with PP and their caregivers as stakeholders in mental health decision-making appears feasible in a LMIC setting and should be encouraged.

Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities.

Despite the growing interest in public and patient involvement in research, best practices in the leprosy context have yet to be explored. This mixed-method study aimed to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research through: (i) an exploratory phase consisting of key informant interviews with experts in public and patient involvement (n = 2) and experts-by-experience (i.e., persons affected by leprosy; n = 4), and (ii) an in-depth phase among leprosy researchers consisting of an online survey (n = 21) and key informant interviews (n = 7). Qualitative data were thematically analyzed. Basic descriptive statistics were used to summarize the survey data. Key informant interviewees unanimously agreed to the importance of engagement in research. Survey results indicated that the level of engagement differed across research stages. Identified barriers included a lack of skills for or awareness of engagement among both experts-by-experience and researchers, stigma and limited time and resources. Opportunities included capacity strengthening, creating a shared understanding, building rapport, and establishing a safe environment. In conclusion, this exploratory study emphasized the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding.

Co-producing rapid research: Strengths and challenges from a lived experience perspective.

The Lived Experience Researchers (LERs) of the Mental Health Policy Research Unit (MHPRU) reflect on the experience of conducting rapid co-produced research, particularly during the first year of the COVID-19 pandemic. Throughout this perspective article, we introduce requirements for co-production applying the 4Pi Framework, reflect on specific characteristics of co-production in rapid research, discuss strengths and challenges for involvement of LERs in rapid research, and lastly provide recommendations to achieve meaningful involvement. Incorporating meaningful co-production is an augmentation to any research project, with several benefits to the research, to the team, and to individual researchers. Particularly in the case of rapid research, that aims for efficient translation of knowledge into practice, involvement of experts by experience will be key. The work conducted by the MHPRU LERs presented in this paper demonstrates the viability, value, and potential of this way of working.