Ready, set, co(produce): a co-operative inquiry into co-producing research to explore adolescent health and wellbeing in the Born in Bradford Age of Wonder project.

BACKGROUND: Co-production of research with communities and stakeholders is recognised as best practice, but despite this, transparent reporting and reflective accounts on co-producing research is lacking. Born in Bradford Age of Wonder (AoW) is a large longitudinal health research project, following the health trajectories of up to 30,000 young people across the Bradford district; moreover, AoW has been entirely co-produced with teachers, parents, and young people. This paper describes the co-production of the Born in Bradford Age of Wonder (AoW) project and shares general reflections on co-production from peer researchers involved in co-producing AoW. METHODS: A co-operative inquiry (CI) approach was used to gather written reflections on co-production from ten peer researchers (one teacher, one parent, eight young people) involved in co-producing the AoW project. Written reflections were collected and rough "themes" were identified using thematic analysis. RESULTS: Four key 'themes' were identified: (1) promoting young people's voice and views (2) identifying impacts of co-production, (3) fostering a collaborative ethos, and (4) suggested improvements to the co-production work in AoW. Peer researchers' reflections highlighted how co-production can positively impact research projects such as AoW, whilst also holding broader benefits including giving young people a voice, facilitating their personal development, and fostering a collaborative ethos both within AoW and with partner organisations. Suggested improvements to AoW co-production included supporting greater numbers of young people and researchers to engage in co-production, organising more regular sessions, and establishing clearer communication channels. CONCLUSIONS: Peer researchers' reflections highlight positive impacts of engaging in co-production, both for research projects (including AoW) and for peer researchers' personal and professional development. That said, continued efforts are needed in AoW to meet young people's needs and interests, maintain trusting relationships, and foster sustained growth of co-production efforts within and beyond the AoW project. Evaluation of AoW co-production, along with wider partnership building are key to these efforts.

Born in Bradford (BiB) is a large health research programme, working to improve the health and wellbeing of people in Bradford and beyond. BiB Age of Wonder (AoW) is the next stage of the BiB programme and is collecting data on up to 30,000 teenagers across the Bradford district. A key part of BiB research (and AoW) involves working with community members as equal partners, through a process called co-production. Co-production is often seen as the best way to do health research; however, not all researchers agree on important questions such as what co-production really is, or why or how it is done. To answer these questions, we need to better understand the perspectives and experiences of those involved in co-production. This study gathered written reflections on co-production from young people, teachers and parents (described as peer researchers) involved in co-producing AoW. The study looked to capture peer researchers' experiences of doing co-production in general, what possible impact it has, and how co-production in AoW can be improved moving forward.Findings indicated that taking part in co-production can help peer researchers directly impact projects (including AoW), gain useful skills, and encourage collaboration within and beyond AoW. Suggested improvements to AoW co-production included having more regular sessions and having clearer communication with peer researchers. Whilst these findings indicate that AoW co-production is generally working well, an important next step is to evaluate the AoW co-production work and highlight key successes and challenges.

Working together: reflections on how to make public involvement in research work.

BACKGROUND: The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, and this paper responds by reporting how professional and lay researchers collaborated on a research study about falls prevention among older patients in English acute hospitals. It focuses on how they worked together in ways that valued all contributions, as envisaged in the UK standards for public involvement for better health and social care research. METHODS: The paper is itself an example of working together, having been written by a team of lay and professional researchers. It draws on empirical evidence from evaluations they carried out about the extent to which the study took patient and public perspectives into account, as well as reflective statements they produced as co-authors, which, in turn, contributed to the end-of-project evaluation. RESULTS: Lay contributors' deep involvement in the research had a positive effect on the project and the individuals involved, but there were also difficulties. Positive impacts included lay contributors focusing the project on areas that matter most to patients and their families, improving the quality and relevance of outcomes by contributing to data analysis, and feeling they were 'honouring' their personal experience of the subject of study. Negative impacts included the potential for lay people to feel overwhelmed by the challenges involved in achieving the societal or organisational changes necessary to address research issues, which can cause them to question their rationale for public involvement. CONCLUSIONS: The paper concludes with practical recommendations for working together effectively in research. These cover the need to discuss the potential emotional impacts of such work with lay candidates during recruitment and induction and to support lay people with these impacts throughout projects; finding ways to address power imbalances and practical challenges; and tips on facilitating processes within lay groups, especially relational processes like the development of mutual trust.

Involving members of the public in all stages of research as equal partners is a powerful way to make research more relevant. This paper shares an example of such involvement, from a study about falls prevention in English hospitals. Developed by a team of lay people and professional researchers, the paper looks at how we worked together, drawing on evaluations we carried out about how the study took patient and public perspectives into account, and on personal reflections we wrote. Public involvement had a positive effect on the project and the individuals involved, but there were also difficulties. Positive impacts included lay people ensuring the study focused on what mattered most to patients and their families and feeling they had done right by their personal experience of the study's subject. Negative impacts included the potential for people to feel overwhelmed by the changes in organisations or in wider society needed to address the issues being explored by a research study, which could cause them to question why they became involved in the first place. The paper ends with practical recommendations about working together, covering things such as helping lay people with the emotional impact of involvement from the beginning to the end of projects; finding ways to ensure everybody is treated in the same way and solving practical problems; and tips on leading and supporting groups of this kind, especially with personal issues like trusting each other.

Peer researchers' experiences of a co-produced research project on supported decision-making.

BACKGROUND: Making decisions about your own life is a key aspect of independence, freedom, human rights and social justice. There are disabled people who, without support, would be assessed as incapable of making certain decisions but with the appropriate support are capable of making those decisions and so to not provide that support infringes their rights, undermines their autonomy and reinforces their exclusion from society. However, there is limited research evidence available about disabled people's experiences of the range of approaches provided to support decision-making. This article will explore the experiences of four peer researchers who co-produced a research project on how people have, or have not been, supported to make their own decisions. Two of the peer researchers have experience of mental health problems and two are people with an intellectual disability. The article refers to peer research because its subject matter is the relevant lived experience of people. Peer research is therefore an approach within the broader areas of participatory research and co-production. METHODS: The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability to gain an in-depth understanding of their experiences and preferences for how decision-making should be supported. Peer researcher experiences at each stage of the study from design to analysis were explored using data collected from the peer researchers via blogs written at early stages of the study, discussions at team meetings as the fieldwork progressed and at a final workshop at the end of the study which gave the peer researchers the opportunity to focus on their overall reflections of being a peer researcher. The article also discusses motivations to undertake the peer research role, the process of co-production and the challenges negotiated during the study. RESULTS: The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. CONCLUSION: The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate proactively in a research project whilst also highlighting the importance of training for all team members.

Making your own decisions is important. There are disabled people who need support to make some decisions. Supporting disabled people to make decisions is needed so that they are not excluded from society. However, the evidence is limited on disabled people's experiences of how best to support decision-making. This article will explore the experiences of four researchers with mental health problems or an intellectual disability who worked with other researchers to conduct a project on how people have, or have not been, supported to make their own decisions. These researchers are called peer researchers. The peer researchers interviewed 21 people with mental health problems and 20 people with an intellectual disability. These interviews were conducted in order to gain a detailed understanding of the experiences and preferences for how decision-making should be supported. Blogs written by the peer researchers, discussions in team meetings and a workshop at the end of the study enabled the peer researchers to reflect on their experiences. The peer researchers reported a number of positive effects of being involved in the research project which included improvements in skills and self-confidence. The peer researchers' involvement challenged assumptions about the inability of people with an intellectual disability and/or mental health problems to participate in a research project whilst also highlighting the importance of training for all team members.

Integrating lived experience into clinical practice: a case study of young peer providers in pediatric rehabilitation.

PURPOSE: Youth Facilitators (YFs) are peer service providers (SPs) with childhood-onset disabilities working in pediatric rehabilitation teams. This study explored the YF role focusing on what work YFs do, the perceived facilitators and challenges pertinent to the role integration process, and the evolution of the role over the study period. METHODS: A longitudinal, qualitative case study approach was used to gather data over a total period of 14 months through interviews, focus groups, workload logs, and observations. Data were analyzed using the method of thematic analysis. RESULTS: Two YFs, 23 SPs and two managers participated in the study. YFs' work included independent consultation, resource provision, referral making, and program co-facilitation. Analysis produced two contrasting themes. When viewed as a representative of clients, YFs were considered bringing client perspectives to care, adding credibility to clinical services, and empowering clients and families through role modeling. However, when viewed as a professional SP, their expertise was questioned due to role unclarity, limited generalizability of lived experience, and organizational limitations. CONCLUSIONS: Training tailored to local care contexts and organizational supports are needed to transform YFs' experiential knowledge into experiential expertise. We propose strategies for optimal integration of peer providers into clinical care teams.Implications for rehabilitationAs peer service providers with lived experience of disabilities, Youth Facilitators (YFs) have the potential to benefit pediatric rehabilitation services by facilitating empowerment in clients and families as they navigate through life transitions.The YF scope of practice and training should be adapted to fit with individual clinical teams and local care contexts to help YFs establish their experiential expertise in interdisciplinary teams.Establishing YF's core competencies (e.g., advocacy, coaching, and boundary setting skills) can help transform their experiential knowledge into experiential expertise.

Rethinking Universal Health Coverage: A qualitative study of patient organisation perspectives on the Turkish health-care system.

Universal health coverage (UHC) has been elevated to the status of a global policy target, but this was at the expense of losing its aspirational meaning. As a case in point, Turkey has been one of the countries that has achieved UHC, according to the technocratic definition. This article employs a combination of deductive and inductive thematic analysis methods to explore patient organisation (PO) perspectives on the Turkish health-care system based on 26 respondent interviews from 19 POs in Istanbul. Highlighting the inadequacy of the technocratic definition of UHC, the article maintains that an analysis of PO perspectives opens the way for a nuanced and bottom-up assessment of essential service coverage and financial protection by identifying elusive gaps in both dimensions that would otherwise be lost in generalist evaluations. The findings also underline the importance of keeping intact the UHC's aspirational element to enable POs to participate in the politics of priority setting in health care.

Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme.

BACKGROUND: Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team. METHODS: Our paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice. RESULTS: We reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of 'emotional work'; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication. CONCLUSIONS: Our work provides one example of the 'messy' nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.

Unintended consequences of institutionalizing peer support work in mental healthcare.

The widespread shift towards recovery-oriented mental healthcare has led to the extensive growth of peer-delivered services. Peer support workers draw on lived experience of mental health challenges and service use to provide non-clinical support services. As peer support services have grown, they have also formalized. This mixed-methods study of peer support work in Pennsylvania (USA) explores how peer support has been institutionalized, and identifies the intended impacts and unintended consequences associated with that process. In Pennsylvania, the inclusion of peer support services as a Medicaid reimbursable service, in addition to county level mandates regarding peer support service availability, have served to institutionalize the field. Data include 49 semi-structured interviews conducted with peer support workers (n = 35) and stakeholders (n = 14) in 2016. Qualitative analyses reveal changes to the scope and nature of peer support work, the peer workforce, peer client relationships, and to stigma in the workplace. Despite these changes, peer workers frequently remain underpaid and unable to advance professionally. The institutionalization of peer support serves as a barrier to worker entry and retention and highlights tensions between the consumer-driven origin of the recovery field and the current mental healthcare system. The institutionalization of roles defined by experiential expertise, such as peer support, has the potential to reduce the very centrality of experiential expertise, reproduce social inequalities, and paradoxically impact stigma.

Uma etnografia virtual em um grupo sobre o transtorno bipolar: sociabilidades e saberes produzidos no meio on-line / Virtual ethnography in a group about bipolar disorder: sociabilities and knowledge produced in the online environment / Una etnografía virtual en un grupo sobre el trastorno bipolar: sociabilidades y saberes producidos en el medio on-line

Publicado pela primeira vez no Manual Diagnóstico e Estatístico de Transtornos Mentais (DSM) III, o transtorno bipolar trouxe uma nova maneira de entender e vivenciar as oscilações emocionais, fortemente imbuída dos referenciais da psicofarmacologia, neurociências e novas conceituações sobre as variações afetivas. Com o objetivo de investigar os sentidos, as sociabilidades e os modos de ser constituídos a partir desse diagnóstico, foi feita uma etnografia no grupo brasileiro do Facebook mais numeroso sobre a bipolaridade, que identificou o seguinte: a rede facilita a produção de uma expertise experiencial; a ideia de que "apenas quem sofre entende" fortalece a identificação mútua; em contraposição à antiga psicose maníaco-depressiva, o transtorno bipolar adquire certa positividade, tornando-se fonte de humor; a química medicamentosa é o principal recurso usado para gerir a vida afetiva, tornando os pacientes parcialmente independentes do médico ao manejarem esses recursos entre si; e o transtorno bipolar é dissociado do Eu.(AU)

Published for the first time in DSM IIII, bipolar disorder has brought a new way of understanding and experiencing emotional oscillations, strongly impregnated with the frameworks of psychopharmacology, neurosciences, and with new conceptualizations of affective variations. Aiming to investigate the meanings, sociabilities and ways of being constituted from this diagnosis, an ethnography was performed in the most numerous Brazilian Facebook group about bipolar disorder, which identified the following aspects: the network facilitates the production of an experiential expertise; the idea that "only those who suffer from it can understand it" strengthens mutual identification; in opposition to manic depression, as it was formerly called, bipolar disorder acquires a certain positivity, becoming a source of humor; drug therapy is the main resource used to manage affective life, making patients partially independent from the physician when they handle these resources among themselves; bipolar disorder is dissociated from the "self".(AU)

Publicado por primera vez en el DSM III, el trastorno bipolar proporcionó una nueva manera de entender y experimentar las oscilaciones emocionales, fuertemente basada en los referenciales de la psicofarmacología, neurociencias y nuevas conceptuaciones sobre las variaciones afectivas. Con el objetivo de investigar los sentidos, sociabilidades y modos de ser constituidos a partir de este diagnóstico, se realizó una etnografía en el grupo brasileño del Facebook más numeroso sobre la bipolaridad que identificó lo siguiente: la red facilita la producción de una expertise con base en la experiencia; la idea de que "solamente quien lo sufre entiende" fortalece la identificación mutua; en contraposición a la antigua psicosis maníaco-depresiva, el trastorno bipolar adquiere cierta positividad, convirtiéndose en fuente de humor; la química medicamentosa es el principal recurso utilizado para administrar la vida afectiva, haciendo que los pacientes sean parcialmente independientes del médico al manejar estos recursos entre sí; el trastorno bipolar se disocia del "yo".(AU)

Experiential peer support and its effects on desistance from delinquent behavior: protocol paper for a systematic realist literature review.

BACKGROUND: Experiential peers are increasingly involved in the development and delivery of interventions for individuals who are engaged in delinquent behavior. Experiential peer support, which is the provision of support to an individual engaged in delinquent behavior by someone who has previously also practiced such behavior, is one such application. Little is known, however, about its effects on desistance, or the mechanisms that explain these effects. On the basis of theoretical papers, program descriptions, and interviews with experts, we developed an initial program theory. We propose seven mechanisms that might play a role in the (potential) effects of support by experiential peers: (1) empathy and acceptance, (2) social learning, (3) social bonding, (4) social control, (5) narrative and identity formation, (6) hope and perspective, and (7) translation and connection. In addition, in this protocol paper, we describe the methods of a systematic realist literature review that will be conducted in order to investigate the evidence base for this program theory. METHODS: The study described in this protocol paper is a realist review, which is a suitable approach to study complex interventions and fits the explanatory purpose of the study. We outline the steps to be taken for the systematic realist review, including the selection and assessment of studies and the methods for synthesizing the findings. DISCUSSION: Investigating the effects and the underlying mechanisms of support by experiential peers for individuals with delinquent behavior is relevant because the forensic setting has some unique features, and the involvement of service users might create even more tension than in other settings due to stigma and perceived risks. The findings that will be reported in the realist review will contribute to the knowledge of the effects of support by experiential peers and will provide insight into which aspects remain to be studied. It might also provide formal care institutions with guidance on whether to involve experiential peers in the delivery of their services and the conditions under which these interventions are likely to lead to positive results.

[Self-help groups and patient participation: current results and projects in the Belgian region of Flanders]. / Selbsthilfe und Patientenbeteiligung: aktuelle Ergebnisse und Projekte in der belgischen Region Flandern.

In 2018, around 1500 self-help groups existed in the Belgian region of Flanders, dealing with almost 200 different diseases or problems. Most have existed for 25 to 35 years, with new initiatives added annually. The first part of this article describes the development of self-help groups and patient participation in Flanders. The second part discusses the legal framework for the participation of patient associations at the micro-, meso-, and macrolevel. The third section describes two current practical examples of patient participation in the health system: the "self-help-friendly hospital" and "the integration of experts by experience in hospitals" with initial interim results. Finally, we discuss development and growth opportunities, as well as needs of self-help groups and patient associations and their support agencies and umbrella associations. More support for self-help groups and increased recognition of their achievements can promote structural forms of cooperation with the professional health system and boost patient participation.

Collecting and validating experiential expertise is doable but poses methodological challenges.

OBJECTIVES: To give an overview of important methodological challenges in collecting, validating, and further processing experiential expertise and how to address these challenges. STUDY DESIGN AND SETTING: Based on our own experiences in studying the concept, operationalization, and contents of experiential expertise, we have formulated methodological issues regarding the inventory and application of experiential expertise. RESULTS: The methodological challenges can be categorized in six developmental research stages, comprising the conceptualization of experiential expertise, methods to harvest experiential expertise, the validation of experiential expertise, evaluation of the effectiveness, how to translate experiential expertise into acceptable guidelines, and how to implement these. The description of methodological challenges and ways to handle those are illustrated using diabetes mellitus as an example. CONCLUSION: Experiential expertise can be defined and operationalized in terms of successful illness-related behaviors and translated into recommendations regarding life domains. Pathways have been identified to bridge the gaps between the world of patients' daily lives and the medical world.