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.

What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.

BACKGROUND: Guidance on co-production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co-production. Authentic sharing of power within co-produced mental health research does not always occur however and remains a challenge to achieve within many projects. OBJECTIVES: To explore what has been learned about the sharing of power in co-production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co-produced mental health research. METHODS: We carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed-method studies relating to power within co-produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research. RESULTS: We identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth. CONCLUSIONS: Results highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co-produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers. PATIENT OR PUBLIC CONTRIBUTION: The study authors include a lived experience researcher who contributed to the review design, analysis and write-up.

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.).

The Co-Production, Pilot and Qualitative Evaluation of a Cancer Prevention Programme With High-Risk Women Delivered on Group Walks by Cancer Champions: Shoulder to Shoulder, Walk and Talk.

OBJECTIVES: Women in the criminal justice system and women who have been subject to domestic abuse are at high risk of cancer but underrepresented in health promotion research. We aimed to co-produce, pilot and evaluate a health promoting programme delivered on group walks. DESIGN: A programme co-produced by women, based on motivational interviewing, created the opportunity for supportive conversations about cancer prevention. METHODS: Programme development in two workshops with women with lived experience using authentic vignettes to prompt help-seeking conversations. A small pilot and a qualitative evaluation was done using framework analysis. RESULTS: The programme appeared acceptable to women and the walk leaders. Women felt included and found it a safe space for sensitive conversations. They appeared empowered and more confident to seek help. Walk leaders expressed confidence in delivering this informal programme, which used prompts rather than delivering didactic training. CONCLUSION: Cancer prevention for high-risk groups can be delivered in a personalised and novel way by creating informal opportunities for supportive conversations about cancer prevention. Careful co-production of the programme of walks with women, using scenarios and quotes that were authentic vignettes, ensured that these came directly from the women's lived experience and enabled women to talk about change. Our findings indicate that this approach was practical, relevant and acceptable to them with some evidence of women feeling empowered to make informed decisions about their health. We recommend that future cancer prevention programmes for underrepresented groups take an asset-based approach by utilising pre-existing community organisations to increase reach and sustainability. PATIENT AND PUBLIC INVOLVEMENT: Women with lived experience co-designed and tested the programme. Provisional findings were fed back to the women and the women's organisation that partnered with this research.

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.

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.

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.

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.

'The Norm Is to Not Openly Collaborate': Using the Lens of Co-Production to Evaluate the Development of a COVID-19 ICU Triage Policy.

INTRODUCTION: In 2020, surging cases of COVID-19 meant that health services had to plan for crisis-level triage. In the Australian Capital Territory, the Clinical Health Emergency Coordination Centre sought to develop a triage policy in collaboration with a range of consumer, carer and community groups. This study aims to map the collaborative development of the COVID-19 ICU triage policy onto the principles of co-production. METHODS: Interviews were conducted with facilitators, members of advocacy or consumer groups and clinicians who were involved in the development of the triage policy. Interviews were thematically analysed using both theory- and data-driven approaches to, respectively, draw on the theoretical framework of co-production, and to explore participants' perspectives relevant to but beyond the scope of this theoretical framework. RESULTS: The findings suggest that at each stage of the initiative, there were ways in which the principles of co-production were met, and ways in which they were not met. One of the fundamental concerns that arose was about whether trying to solve a problem based on resources was compatible with a solution based on human rights. CONCLUSION: Literature about co-production has been critiqued for being limited to aspirational concerns, or implying co-production is easily achievable. The current study contributes to existing research through the application of the theoretical framework of co-production and exploring ways its aims were met and not met within a system-level collaboration developing a high-stakes health policy. PATIENT OR PUBLIC CONTRIBUTION: This study has been conducted and written by researchers working from lived experience perspectives, and other researchers working from traditionally mainstream health disciplines, including psychology and medicine. Further, the study is about patient and public involvement in the development of a health policy. Thus it both embodies and is about non-tokenistic collaboration between people with lived experience and other health professionals.

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.

Understanding Co-Creation in a Research Partnership Programme Exploring Patient-Driven Innovations: A Qualitative Longitudinal Study.

BACKGROUND: Research indicates that successful co-creation depends on a shared understanding of co-creation and its related concepts. However, it also shows that, in practice, views on co-creation and how to do it differ. This study aims to explore how patient innovators and researchers in a partnership research programme understand co-creation and how this understanding changes over time. METHODS: An explorative longitudinal qualitative study was conducted with the 'Patients in the Driver's Seat' partnership research programme. Fifty-eight interviews were performed and analysed using a reflexive thematic approach. FINDINGS: Four different ways of understanding co-creation were identified. These can be instrumentally conceptualized as themes using the inputs-process-outputs model: (1) combining different perspectives, experiences and backgrounds (inputs); (2) deliberately dynamic and exploratory (process); (3) striving for equity, not equality (process); and (4) diverse value creation, tangible and intangible (outputs). Together, these themes represent the varied understandings of co-creation among partnership programme members. CONCLUSIONS: Our study of patient innovators and researchers identified four distinct yet complementary understandings of co-creation. The study suggests that co-creation is the sum of its essential components, which can be divided into inputs, process, and outputs. PATIENT OR PUBLIC CONTRIBUTION: This study, and the partnership programme it explored, aims to improve the relevance of research for patients and informal caregivers through an improved understanding of the concept of co-creation within research on patient innovation. All patient innovators involved in the programme were invited, as interviewees and researchers, to contribute to the study design and data analysis.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Engagement in rapid public health research among young people from underserved communities: maximising opportunities and overcoming barriers.

BACKGROUND: Inclusion in public health research of young people from low-income households and those from minority ethnic groups remains low. It is recognised that there is a need to change the way in which research is conducted so that it becomes more inclusive. The aim of this work was to identify novel and innovative ways to maximise recruitment and inclusion of diverse participants when doing co-production within very short time frames for emergency responses. METHOD: We conducted interviews with young people from low-income and minority ethnic backgrounds, and members or leaders of groups or organisations supporting or representing young people from underserved communities. RESULTS: A total of 42 participants took part in an interview. This included 30 young people from low income or minority ethnic backgrounds and 12 community leaders/service providers. Of the 30 young people, 26 participants identified as female and 12 participants identified as being from a minority ethnic background. Participants discussed a number of interrelated barriers to research involvement and identified ways in which barriers may be reduced. Prejudice and discrimination experienced by young people from underserved communities has led to substantial mistrust of educational and governmental establishments. Rigid and unfamiliar research practices further limit the involvement of young people. Four themes were identified as ways of supporting involvement, including: making opportunities available for young people, adaptations to research governance, understanding and acknowledging challenges faced by young people, and ensuring reciprocal benefits. CONCLUSION: This research explored barriers to engagement in rapid public health co-production. Working with communities to co-produce rapid recruitment and research procedures to suit the needs and the context in which young people live is necessary.

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.