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.

Enhancing quality of life measurement: adapting the ASCOT easy read for older adults accessing social care.

PURPOSE: This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care. METHODS: A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibility and relevance of the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT. RESULTS: Co-research with people with dementia and their supporters was critical to the development of an effective and accessible tool. Issues identified with comprehension, recall, judgement and response were addressed through iterative adjustments to design, layout and wording. An unexpected finding was that illustrations were disliked or disregarded by the majority of people, and, in particular, those living with dementia. This result contrasts with the typical assumption of easy read approaches, where illustrations are expected to enhance comprehension. CONCLUSION: The ASCOT-ER measure for older people is suitable for older people using social care services with mild to moderate dementia, mild cognitive impairment and other age-related needs. The revisions applied were designed to improve comprehension, judgement and response for this group and even those who were most cognitively impaired experienced fewer issues by the final round of testing. Nonetheless, some prompting was still required, particularly for those with higher levels of cognitive impairment and it is likely that some respondents will require the questionnaire to be administered in an interview format.

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.

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.

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.

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 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.

'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.