RISE-Vac-Co-production of Vaccine Education Materials with Persons Living in Prison.

Increasing vaccination knowledge is effective in addressing hesitancy and is particularly important in populations deprived of liberty who may not routinely have access to health information, ensuring health equity. RISE-Vac is a European Union-funded project aiming to promote vaccine literacy, offer, and uptake in prisons in Europe. We consulted persons living in prisons in the United Kingdom (through the Prisoner Policy Network), France, and Moldova to determine their vaccination knowledge gaps, the information they would like to receive, and how they would like to receive it. We received 344 responses: 224 from the United Kingdom, 70 from France, and 50 from Moldova. Participants were particularly interested in learning about the effectiveness, side effects, and manufacturing of vaccines. Their responses guided the development of educational materials, including a brochure that will be piloted in prisons in Europe. Persons with experience of imprisonment were involved at every stage of this project.

Reflections on co-producing an obesity-prevention toolkit for Islamic Religious Settings: a qualitative process evaluation.

BACKGROUND: Islamic leaders, staff, and Muslim parents in the UK are supportive of healthy lifestyle intervention delivery through Islamic Religious Settings. Such interventions are necessary given high obesity rates in British South Asian (40%) compared to White British (32%) children of equivalent age. Co-production can facilitate the development of culturally appropriate health interventions, however it can be theoretically and practically challenging, and evaluation of co-production within an Islamic Religious Setting context is lacking. The aim of this study was to examine the feasibility and acceptability of taking a co-production approach to develop an obesity-prevention toolkit for Islamic Religious Settings. METHODS: An obesity-prevention toolkit for use in Islamic Religious Settings, incorporating physical activity, healthy diet, and organisational change, has been co-produced to be evidence-informed and contextually relevant. A qualitative process evaluation was employed to examine experiences of co-production. Semi-structured interviews (n = 15) and a focus group (n = 5) were conducted with toolkit co-production stakeholders, e.g., subject experts, an Islamic scholar, and Islamic Religious Setting staff. Transcripts were analysed inductively using reflexive thematic analysis. RESULTS: The analysis revealed four major themes regarding stakeholders' experiences of co-producing a childhood obesity-prevention toolkit for Islamic Religious Settings. These themes are: (1) attitudes towards obesity-prevention through Islamic Religious Settings, (2) benefits of co-production including capacity building and ownership (3) negotiating involvement, power, and perspectives within the co-production process, and (4) the complexities of effective communication in co-production. CONCLUSION: This study adds to the evidence-base in support of delivering health promotion through faith settings. Taking a co-production approach to develop an obesity-prevention toolkit for Islamic Religious Settings provided benefit to the toolkit product and local stakeholders. The toolkit is currently being implemented across Bradford, UK and there is potential to adapt the toolkit to other geographical contexts, and for evaluating effectiveness for preventing obesity in British Muslim families.

Experiences of a digital health intervention for young people exposed to technology assisted sexual abuse: a qualitative study.

BACKGROUND: There is growing evidence that Technology Assisted Sexual Abuse (TASA) represents a serious problem for large numbers of children. To date, there are very few evidence-based interventions available to young people (YP) after they have been exposed to this form of abuse, and access to support services remains a challenge. Digital tools such as smartphones have the potential to increase access to mental health support and may provide an opportunity for YP to both manage their distress and reduce the possibility of further victimization. The current study explores the acceptability of a digital health intervention (DHI; the i-Minds app) which is a theory-driven, co-produced, mentalization-based DHI designed for YP aged 12-18 who have experienced TASA. METHODS: Semi-structured interviews were conducted with 15 YP recruited through Child and Adolescent Mental Health Services, a Sexual Assault Referral Centre and an e-therapy provider who had access to the i-Minds app as part of a feasibility clinical trial. Interviews focused on the acceptability and usability of i-Minds and were coded to themes based on the Acceptability of Healthcare Interventions framework. RESULTS: All participants found the i-Minds app acceptable. Many aspects of the app were seen as enjoyable and useful in helping YP understand their abuse, manage feelings, and change behavior. The app was seen as usable and easy to navigate, but for some participants the level of text was problematic and aspects of the content was, at times, emotionally distressing at times. CONCLUSIONS: The i-Minds app is useful in the management of TASA and helping change some risk-related vulnerabilities. The app was designed, developed and evaluated with YP who had experienced TASA and this may account for the high levels of acceptability seen. TRIAL REGISTRATION: The trial was registered on the ISRCTN registry on the 12/04/2022 as i-Minds: a digital intervention for young people exposed to online sexual abuse (ISRCTN43130832).

Power to the people? A co-produced critical review of service user involvement in mental health professions education.

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.

A co-created multimethod evaluation of recovery education in Ireland.

BACKGROUND: This paper aims to explore the impact of recovery education on recovery knowledge, attitudes and the quality of life of students undertaking recovery education, contributing to the evidence base in relation to the impact of recovery education. It also explores the experiences of all stakeholders involved in the co-facilitation, delivery and participation in recovery education. SETTING AND PARTICIPANTS: This study evaluates the experiences of stakeholders involved in the co-facilitation, delivery and participation in recovery education across four recovery colleges in Ireland. Participants included students undertaking recovery education, peer educators, education facilitators, recovery college coordinators and practitioner/service providers. DISCUSSION: Findings from the quantitative survey when compared with extant literature suggest that students had a good understanding of recovery education. The social aspect of empowerment for growth and wellbeing was identified through themes relating to co-production and facilitating student learning. Support for equitable access to recovery education, including co-production for both the public and staff, was identified as a challenge for the future. CONCLUSION: The findings from both the qualitative and quantitative components of the study show the positive impact of recovery education on stakeholders while acknowledging the need for ongoing support for people working in recovery education and the development of services. In particular, there was a high level of recovery knowledge found in students undertaking recovery education. PATIENT OR PUBLIC CONTRIBUTION: This study utilised a co-created study design. From inception a steering group comprising stakeholders (peer educators, recovery education facilitators including past recovery college students and nonpeer staff involved in the co-production of recovery education) directed the conduct of the evaluation. This steering group participated in an iterative process of information sharing, suggestions for evaluation process and language.

Qualitative Exploration of Speech Pathologists' Experiences and Priorities for Aphasia Service Design: Initial Stage of an Experience-Based Co-Design Project to Improve Aphasia Services.

INTRODUCTION AND AIMS: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. METHODS AND ANALYSIS: This is the initial experience gathering and priority identification stage of an experience-based co-design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. RESULTS: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient-provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). CONCLUSIONS: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). PATIENT OR PUBLIC CONTRIBUTION: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co-designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.).

Co-production of health and social science research with vulnerable children and young people: A rapid review.

BACKGROUND: The term 'care-experienced' refers to anyone who is currently in care or has been in care at any stage in their life. A complex interplay of factors leads to care-experienced children and young people (CECYP) experiencing poorer oral health and access to dental care than their peers. A rapid review of the co-production of health and social care research with vulnerable children and young people (CYP) was carried out to inform the development of a co-produced research project exploring the oral health behaviours and access to dental services of CECYP. Here, 'co-production' refers to the involvement of CYP in the planning or conduct of research with explicit roles in which they generate ideas, evidence and research outputs. AIM: To learn how to meaningfully involve vulnerable CYP in the co-production of health and social science research. OBJECTIVES: To identify: Different approaches to facilitating the engagement of vulnerable CYP in co-production of health and social science research; different activities carried out in such approaches, challenges to engaging vulnerable CYP in co-production of health and social science research and ways to overcome them and areas of best practice in relation to research co-production with vulnerable CYP. SEARCH STRATEGY: A rapid review of peer-reviewed articles was conducted in six databases (MEDLINE, Embase, SocINDEX, CINAHL, PsycINFO and Web of Science) and grey literature to identify studies that engaged vulnerable CYP in co-approaches to health and social research. MAIN RESULTS: Of 1394 documents identified in the search, 40 were included and analysed. A number of different approaches to co-production were used in the studies. The CYP was involved in a range of activities, chiefly the development of data collection tools, data collection and dissemination. Individual challenges for CYP and researchers, practical and institutional factors and ethical considerations impacted the success of co-production. DISCUSSION AND CONCLUSION: Co-production of health and social science with vulnerable CYP presents challenges to researchers and CYP calling for all to demonstrate reflexivity and awareness of biases, strengths and limitations. Used appropriately and well, co-production offers benefits to researchers and CYP and can contribute to research that reflects the needs of vulnerable CYP. Adherence to the key principles of inclusion, safeguarding, respect and well-being facilitates this approach. PATIENT AND PUBLIC CONTRIBUTION: Members of our patient and public involvement and stakeholder groups contributed to the interpretation of the review findings. This manuscript was written together with a young care leaver, Skye Boswell, who is one of the authors. She contributed to the preparation of the manuscript, reviewing the findings and their interpretation.

Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease.

BACKGROUND: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. OBJECTIVE: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. METHODS: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. RESULTS: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. CONCLUSION: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. PATIENT OR PUBLIC CONTRIBUTION: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members.

From Research to Knowledge Translation: Co-Producing Resources to Raise Awareness of Meals on Wheels in England.

BACKGROUND: Meals on Wheels (MoWs) could help adults with care and support needs continue living independently. However, many people are not aware that the service still exists in England, or that it could provide benefits beyond nutrition. OBJECTIVE: Working with an existing advisory group of six people with lived experience of MoWs (an adult who uses MoWs and people who have referred a family member to MoWs), this work aimed to co-produce knowledge translation resources (two infographics and a film) to raise awareness of MoWs and their benefits. METHODS: Four participatory online workshops were held in May-July 2023, to establish perceived high-priority themes from recent qualitative research that should be included in the resources, and preferences about message content, language, design, and how the resources should be disseminated. FINDINGS: The most important perceived MoWs benefits that the group agreed should be included in the resources were: the importance of a nutritious meal that requires no preparation; the service's reliability/consistency; the importance of interactions in reducing social isolation, and; the ease to commence the service. The group highlighted the need for language to be nontechnical and invitational, and for images to relate to respective messages, and be inclusive of anyone who could benefit from MoWs. Several routes for dissemination were proposed, highlighting the need to disseminate to the NHS, social care organisations and community groups. CONCLUSION: These co-produced resources could enhance adult social care delivery in England, as raising awareness of MoWs and their benefits could increase referral rates, so that more adults with care and support needs can benefit from the service. PATIENT OR PUBLIC CONTRIBUTION: An advisory group of people with lived experience of MoWs (users of the service and family referrers) participated in the workshops, extensively discussed the findings of earlier research, co-produced the knowledge translation resources, and advised on the implications and future dissemination steps. The group also provided informal feedback on a draft of this manuscript.

Understanding and Defining Young People's Involvement and Under-Representation in Mental Health Research: A Delphi Study.

INTRODUCTION: The mental health of young people (aged 16-25 years) is a growing public health concern in the United Kingdom due to the increasing numbers of young people experiencing mental health difficulties, with many not in contact with mental health services. To design services that meet the needs of all young people, a diversity of young people must be involved in mental health research, beyond being participants. This Delphi study aimed to identify different types of 'involvement' and to define and describe 'under-representation' in young people's involvement in mental health research. METHODS: Twenty-seven experts in young people's mental health research completed a series of online questionnaires. The experts were academic researchers, patient and public involvement (PPI) professionals and young 'experts by experience'. Round 1 generated panellists' views on 'involvement' and 'under-representation'. Round 2 summarised panellists' responses from Round 1 and sought consensus (minimum 70% agreement) in nine question areas. Round 3 validated the findings of the previous rounds. RESULTS: Consensus was achieved in eight out of nine areas, resulting in a matrix (with definitions) of the different types of young people's involvement in mental health research, from being advisors to involvement ambassadors. The findings generated an agreed-upon definition of under-representation, an identification of when in the research process there is under-representation and the characteristics of the young people who are under-represented. Experts further agreed on demographic data that should be collected to improve reporting on involvement. CONCLUSIONS: This study adds to our understanding of involvement and under-representation in the context of young people's mental health research through expert consensus. It provides a practical resource for researchers considering involving young people in the research process and suggests the data that should be collected to improve reporting on the diversity of the young people involved. PATIENT AND PUBLIC CONTRIBUTION: A research oversight group of five young people advised on this study. They contributed throughout the project-from endorsing the research question to commenting on the findings and dissemination. Two of the group reviewed all participant materials and piloted the initial questionnaire.

Commissioning and co-production in health and care services in the United Kingdom and Ireland: An exploratory literature review.

INTRODUCTION: This exploratory literature review seeks to examine the literature around commissioning processes in the co-production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co-production in service design and delivery? What are the contextual factors that influence these processes? METHOD: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008-2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty-seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. RESULTS: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co-production; navigating relationships and the collective voice. CONCLUSION: Commissioning processes were commonly a barrier to the co-production of health and care services. Though co-production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer-term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. PATIENT AND PUBLIC CONTRIBUTION: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement.

Co-production and adaptation of a prison-based problem-solving workbook to support the mental health of patients housed within a medium- and low-secure forensic service.

INTRODUCTION: Problem-solving skills (PSS) help to provide a systematic approach to dealing with and managing complex problems. The overall aim of this study was to assess the acceptability and feasibility of developing and adapting a prison-based PSS  workbook for adults within a medium- and low-secure hospital. METHOD: We used the Medical Research Council framework in our participatory mixed methods study incorporating an adapted survey (to identify what types of problems people experience in secure hospitals), a series of three interactive workshops (to co-produce two case study examples for a workbook) and we gathered feedback from patients and hospital staff on the acceptability and feasibility of the workbook. Data from the survey were used to inform the case study examples, and the feedback from patients and hospital staff was descriptively summarised and the results consolidated. RESULTS: In total, 82 (51%) patients took part in the survey; 22 patients and 49 hospital staff provided feedback on the workbook. The survey results indicated that patients regularly experience problems while in the hospital. Patients reported problems relating to restrictions of freedom and boredom. The workshops produced two case studies for the workbooks, with mainly positive patient and staff feedback. More work is required to improve the visual representation of the characters in the case studies, the amount and content of the language and the mechanism of the intervention delivery. CONCLUSION: The adaptation process proved acceptable and feasible to both patients and staff. The co-production methodology for the workbook and feedback from patients and staff was an effective way of iteratively refining the materials to ensure that they were both meaningful and acceptable to staff and patients. Subsequent work is required to develop the workbook and evaluate the feasibility of the intervention delivery, recruitment rates, uptake and adherence to the PSS using a randomised controlled trial. PATIENT OR PUBLIC CONTRIBUTION: At each stage of the project consultation with patients and/or hospital staff was involved.

Bridging the gap between research evidence and its implementation in public health practice: case studies of embedded research model.

AIM: To investigate the potential of embedded research in bridging the gap between research evidence and its implementation in public health practice. METHODS: Using a case study methodology, semi-structured interviews were conducted with 4 embedded researchers, 9 public health practitioners, and 4 other stakeholders (2 teachers and 2 students) across four case study sites. Sites and individuals were purposively selected. Sites included two local authorities, one secondary school, and one sports organisation. Thematic data analysis was adopted to analyse the qualitative data. RESULTS: Four themes were identified: (1) building and maintaining relationships, (2) working with stakeholders, (3) informing practice, and (4) critical reflection. CONCLUSIONS: Embedded researchers build and maintain relationships with practitioners and other stakeholders to produce research. Evidence from the co-produced research informs future practice and research to improve service and delivery rendered to the public. Thus, embedded researchers use their role to bridge the research evidence - implementation gap in public health practice.

Population mortality before and during the COVID-19 epidemic in two Sudanese settings: a key informant study.

BACKGROUND: Population mortality is an important metric that sums information from different public health risk factors into a single indicator of health. However, the impact of COVID-19 on population mortality in low-income and crisis-affected countries like Sudan remains difficult to measure. Using a community-led approach, we estimated excess mortality during the COVID-19 epidemic in two Sudanese communities. METHODS: Three sets of key informants in two study locations, identified by community-based research teams, were administered a standardised questionnaire to list all known decedents from January 2017 to February 2021. Based on key variables, we linked the records before analysing the data using a capture-recapture statistical technique that models the overlap among lists to estimate the true number of deaths. RESULTS: We estimated that deaths per day were 5.5 times higher between March 2020 and February 2021 compared to the pre-pandemic period in East Gezira, while in El Obeid City, the rate was 1.6 times higher. CONCLUSION: This study suggests that using a community-led capture-recapture methodology to measure excess mortality is a feasible approach in Sudan and similar settings. Deploying similar community-led estimation methodologies should be considered wherever crises and weak health infrastructure prevent an accurate and timely real-time understanding of epidemics' mortality impact in real-time.

Co-designing adult weight management services: a qualitative study exploring barriers, facilitators, and considerations for future commissioning.

BACKGROUND: Weight management services have not always benefitted everyone equally. People who live in more deprived areas, racially minoritised communities, those with complex additional needs (e.g., a physical or mental disability), and men are less likely to take part in weight management services. This can subsequently widen health inequalities. One way to counter this is to co-design services with under-served groups to better meet their needs. Using a case study approach, we explored how co-designed adult weight management services were developed, the barriers and facilitators to co-design, and the implications for future commissioning. METHODS: We selected four case studies of adult weight management services in Southwest England where co-design had been planned, representing a range of populations and settings. In each case, we recruited commissioners and providers of the services, and where possible, community members involved in co-design activities. Interviews were conducted online, audio-recorded, transcribed verbatim, and analysed using thematic analysis. RESULTS: We interviewed 18 participants (8 female; 10 male): seven commissioners, eight providers, and three community members involved in co-designing the services. The case studies used a range of co-design activities (planned and actualised), from light-touch to more in-depth approaches. In two case studies, co-design activities were planned but were not fully implemented due to organisational time or funding constraints. Co-design was viewed positively by participants as a way of creating more appropriate services and better engagement, thus potentially leading to reduced inequalities. Building relationships- with communities, individual community members, and with partner organisations- was critical for successful co-design and took time and effort. Short-term and unpredictable funding often hindered co-design efforts and could damage relationships with communities. Some commissioners raised concerns over the limited evidence for co-design, while others described having to embrace "a different way of thinking" when commissioning for co-design. CONCLUSIONS: Co-design is an increasingly popular approach to designing health in services but can be difficult to achieve within traditional funding and commissioning practices. Drawing on our case studies, we present key considerations for those wanting to co-design health services, noting the importance of building strong relationships, creating supportive organisational cultures, and developing the evidence base.

The complexity of leadership in coproduction practices: a guiding framework based on a systematic literature review.

BACKGROUND: As coproduction in public services increases, understanding the role of leadership in this context is essential to the tasks of establishing relational partnerships and addressing power differentials among groups. The aims of this review are to explore models of coproduction leadership and the processes involved in leading coproduction as well as, based on that exploration, to develop a guiding framework for coproduction practices. METHODS: A systematic review that synthesizes the evidence reported by 73 papers related to coproduction of health and welfare. RESULTS: Despite the fact that models of coleadership and collective leadership exhibit a better fit with the relational character of coproduction, the majority of the articles included in this review employed a leader-centric underlying theory. The practice of coproduction leadership is a complex activity pertaining to interactions among people, encompassing nine essential practices: initiating, power-sharing, training, supporting, establishing trust, communicating, networking, orchestration, and implementation. CONCLUSIONS: This paper proposes a novel framework for coproduction leadership practices based on a systematic review of the literature and a set of reflective questions. This framework aims to help coproduction leaders and participants understand the complexity, diversity, and flexibility of coproduction leadership and to challenge and enhance their capacity to collaborate effectively.

Improving patients' experiences of diagnosis and treatment of vertebral fracture: co-production of knowledge sharing resources.

BACKGROUND: Osteoporosis involves changes to bones that makes them prone to fracture. The most common osteoporotic fracture is vertebral, in which one or more spinal vertebrae collapse. People with vertebral fracture are at high risk of further fractures, however around two-thirds remain undiagnosed. The National Institute for Health and Care Excellence (NICE) recommends bone protection therapies to reduce this risk. This study aimed to co-produce a range of knowledge sharing resources, for healthcare professionals in primary care and patients, to improve access to timely diagnosis and treatment. METHODS: This study comprised three stages: 1. In-depth interviews with primary care healthcare professionals (n = 21) and patients with vertebral fractures (n = 24) to identify barriers and facilitators to diagnosis and treatment. 2. A taxonomy of barriers and facilitators to diagnosis were presented to three stakeholder groups (n = 18), who suggested ways of identifying, diagnosing and treating vertebral fractures. Fourteen recommendations were identified using the nominal group technique. 3. Two workshops were held with stakeholders to co-produce and refine the prototype knowledge sharing resources (n = 12). RESULTS: Stage 1: Factors included lack of patient information about symptoms and risk factors, prioritisation of other conditions and use of self-management. Healthcare professionals felt vertebral fractures were harder to identify in lower risk groups and mistook them for other conditions. Difficulties in communication between primary and secondary care meant that patients were not always informed of their diagnosis, or did not start treatment promptly. Stage 2: 14 recommendations to improve management of vertebral fractures were identified, including for primary care healthcare professionals (n = 9) and patients (n = 5). Stage 3: The need for allied health professionals in primary care to be informed about vertebral fractures was highlighted, along with ensuring that resources appealed to under-represented groups. Prototype resources were developed. Changes included help-seeking guidance and clear explanations of medical language. CONCLUSIONS: The study used robust qualitative methods to co-produce knowledge sharing resources to improve diagnosis. A co-production approach enabled a focus on areas stakeholders thought to be beneficial to timely and accurate diagnosis and treatment. Dissemination of these resources to a range of stakeholders provides potential for substantial reach and spread.

Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

A participatory approach to understand what might be most meaningful to people living with dementia in a positive psychology intervention.

OBJECTIVES: This study aimed to understand which character strengths are most important for people living with dementia and therefore which strengths-based psychological interventions could be most meaningful and acceptable. METHODS: A participatory design, utilising Delphi methodology, was incorporated into an iterative three stage framework: (1) literature reviewed for Positive Psychology (PP) interventions and patient public involvement to define the character strengths; (2) modified Delphi (N = 10) identified which character strengths are most important for living with dementia; (3) focus groups (N = 14) explored which PP interventions are most acceptable and meaningful. Qualitative data from the focus groups was analysed using thematic analysis. RESULTS: Love, kindness and humour were deemed the most important character strengths for living with dementia. Qualitative data from the focus groups was captured in three superordinate themes: (1) lack of opportunity not capacity; (2) key considerations of PP interventions for people living with dementia; and (3) potential benefits of PP interventions. CONCLUSIONS: Love, kindness and humour come naturally to people with dementia, but people may lack social opportunities to use these strengths. Therefore, a PP intervention promoting positive emotion, social relationships and connection to one's values appears most meaningful and acceptable as this may provide a social context to use and maintain these strengths.

Operationalising the Recovery College model with people living with dementia: a realist review.

OBJECTIVES: Post-diagnostic support is a significant factor in facilitating personal recovery following a diagnosis of dementia, but access is often inconsistent and insufficient. Recovery Colleges offer peer-led, co-produced courses that can support people to have meaningful lives and have been adapted for use in the context of dementia. A realist review was conducted to understand the application and sustainability of Recovery College dementia courses. METHOD: An iterative, five-step process combined literature published to 2023 with knowledge from stakeholders with lived and professional experience of dementia involved with Recovery College dementia courses (PROSPERO registration CRD42021293687). RESULTS: Thirty-five documents and discussions with 19 stakeholders were used to build the initial programme theory comprising of 24 context-mechanism-outcome configurations. Reoccurring factors included: attending to aspects of co-production and course delivery to ensure they promoted inclusion and were not compromised by organisational pressures; how stigma impacted access to course opportunities; and embedding personal recovery principles throughout course development to be relevant for people living with dementia and those who support them. CONCLUSION: People struggling to reconcile their future alongside dementia need practical and emotional support to access and benefit from Recovery College dementia courses, ways to achieve this will be explored through a realist evaluation.