Health Expectations最新文献

{"title":"Involving Patients in Pharmacoepidemiology Studies Conducted on Healthcare Administrative Database: Results of a Feasibility Study in France.","authors":"Julie Rigoureau, Manon Verroul, Valentine Vieillard, Anne Termoz, Laurie Panse, Anaïs Havet, Marie Viprey, Julie Haesebaert","doi":"10.1111/hex.70879","DOIUrl":"10.1111/hex.70879","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement in pharmacoepidemiology using healthcare administrative databases remains limited despite its potential to enhance research relevance and societal impact. We evaluated the feasibility and benefits of involving patients as research partners in a Patient Committee for a pharmacoepidemiological study using the French nationwide health insurance database (SNDS).</p><p><strong>Methods: </strong>A participatory feasibility study was conducted through the establishment of a Patient Committee alongside the study's Scientific Committee. A mixed-methods evaluation assessed feasibility combining quantitative indicators, analysis of group dynamics, and thematic analysis of the transcription of the second meeting. Benefits were evaluated based on changes made in protocol, statistical analysis, and civil society dissemination plans based on patients' proposals. The McMaster tool was used to assess the involvement process.</p><p><strong>Results: </strong>Three patients were recruited out of the minimum expected five. Of the five meetings, three were attended by all participants. Consensus was reached on most points discussed and a good cohesion was observed within the Committee. The questions asked to the moderators focused primarily on the progress of the research and on the availability of data beyond the reimbursement-related data available in the SNDS, as data related to the patient's perspective (quality of life or anxiety). At the second meeting, only 13% of coded exchanges fell within the categories previously predefined according to the meeting's objectives. The remaining themes were unrelated to their illness, drug utilisation or care pathways. Patient involvement led to an effective modification of a primary outcome in the research protocol and an additional statistical analysis. Patient Committee also contributed several points for discussion and produced two visual abstracts. Finally, patients expressed satisfaction with their participation, feeling that their opinions had been listened to and taken into account. Project team members involved in project management appeared satisfied with the process, except in logistical needs (very long research timeline with specific deadlines to be met).</p><p><strong>Conclusion: </strong>Although benefits of patient involvement were observed, feasibility was partial due to several obstacles related to participant recruitment and patients' understanding of the SDNS. To improve feasibility, future initiatives should co-construct appropriate methodologies with stakeholders and provide adequate training tailored to the complexity of pharmacoepidemiology research.</p><p><strong>Patient and public contribution: </strong>The study was conducted in collaboration with the patient partner from the research laboratory. She was involved in recruiting the Patient Committee and drafting the recruitment materials (flyer and email). The patient partner also proofrea","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70879"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13591218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149013256","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Navigating Emergency Care After Injury: A Qualitative Study of Asylum Seekers and Refugees in England and Wales Using the Candidacy Framework (BE SURE Study).","authors":"Ashrafunnesa Khanom, Lydia Jones, Hanifah M Khanom, Fadi Baghdadi, Ann John, Alison Porter, Helen Snooks, Niroshan Siriwardena, Julia Williams, Thanuja Hettiarachchi, Solmaz Safari","doi":"10.1111/hex.70861","DOIUrl":"10.1111/hex.70861","url":null,"abstract":"<p><strong>Background: </strong>Asylum seekers and refugees (ASRs) face significant challenges when accessing emergency and pre-hospital care following injury. Language barriers, unfamiliarity with service pathways and limited trust in authorities hinder access to emergency services. We report results of focus groups with asylum seekers and refugees who have accessed emergency services to understand their use of services and care received.</p><p><strong>Method: </strong>We recruited participants through community organisations and support networks which advocate and support asylum seekers and refugees across four areas in England and Wales. We gained informed consent to record and transcribe all focus groups. We applied framework analysis to map emergent qualitative themes onto the seven domains of the Candidacy Framework, in order to examine how access to services was recognised, navigated, and negotiated.</p><p><strong>Results: </strong>We report findings from 35 participants, who demonstrated the ability to recognise situations when emergency care was required, yet their ability to seek help was shaped by uncertainty, fear, and experiences of exclusion. Cultural norms, immigration status, and systemic barriers including complex service pathways and financial constraints affected perceptions of eligibility and influenced help-seeking after injury. Communication difficulties were the most persistent challenge, cutting across all candidacy domains and compounding existing vulnerabilities.</p><p><strong>Conclusion: </strong>This study highlights persistent inequities in access to emergency care for asylum seekers and refugees following injury in England and Wales. Using the Candidacy Framework, it demonstrates how language barriers, uncertainty about entitlements, and structural constraints shape how individuals recognise need, navigate services, and experience emergency care. Addressing these challenges requires embedding equity within emergency care systems through improved communication, navigation support, and sensitivity to the lived realities of asylum seekers and refugees.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70861"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13563497/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148945908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public Perceptions of Multiple Long-Term Conditions: An Analysis of Mass Observation Accounts.","authors":"Sue Bellass, Thomas Scharf, Victoria Bartle, Avan A Sayer, Rachel Cooper","doi":"10.1111/hex.70868","DOIUrl":"10.1111/hex.70868","url":null,"abstract":"<p><strong>Introduction: </strong>The growing number of people living with two or more long-term conditions presents challenges to medicine and society. While the terminology of 'multiple long-term conditions' (MLTC) or 'multimorbidity' has increasingly been adopted in research, policy and clinical practice, how the public responds to 'MLTC' remains underexplored. Given the important implications for research inclusion and intervention uptake, we aimed to address this gap by investigating public perceptions of MLTC.</p><p><strong>Methods: </strong>Mass Observation Project respondents were invited to share their views on MLTC. We collated the five words that respondents were asked to provide when hearing the term 'multiple long-term health conditions' and compared the responses of people with and without MLTC. We then reviewed each full written account and identified categories describing the different ways in which the respondents referred to MLTC.</p><p><strong>Results: </strong>Of 141 valid responses, 76 (53.9%) were written by people living with MLTC, two thirds of whom (67.1%) were aged 60 or over. Regardless of MLTC status, respondents predominantly associated MLTC with challenging embodied experiences such as pain and debilitation. We identified four types of response to 'MLTC': adopting, overlooking, resisting and rejecting. Around half the respondents (51.8%) adopted the construct, with 11.3% resisting or rejecting it due to concerns about its utility, incongruence with personal experience, or medicalisation of human experiences of illness.</p><p><strong>Conclusion: </strong>MLTC were predominantly associated with challenging embodied experiences, and the construct was not adopted by all respondents. Researchers, clinicians and policymakers should carefully consider how to describe the construct of MLTC in public-facing materials to optimise research inclusion and intervention uptake.</p><p><strong>Patient or public contribution: </strong>Co-author VB was a public co-investigator within the ADMISSION Research Collaborative. VB was involved from the outset of this project, contributing to the directive design, data interpretation workshops, critical review of the draft manuscript and approval of the final version. Findings from the study have also been discussed with the ADMISSION Patient Advisory Group, a diverse group of patients and carers with lived experience of MLTC who provided advice to ADMISSION Research Collaborative researchers at regular intervals throughout the lifetime of the funding.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70868"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13573228/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148964012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Integrating a Lived Experience Position Into an Adult Survivors Program in Health: A Co-Reflection of Lived Experience, Clinical and Academic Perspectives.","authors":"Charlene Hurwitz, Elizabeth May, Maya Hayden, Katie McCarthy, Sophie Isobel","doi":"10.1111/hex.70891","DOIUrl":"10.1111/hex.70891","url":null,"abstract":"<p><strong>Background: </strong>Integrating lived experience roles into health services is increasingly recognised as key for effective service delivery. The Adult Survivors Program (ASP) has been established to support adult survivors of childhood sexual abuse, a population with complex health needs and historical mistrust of services. This paper explores the implementation of a dedicated Lived Experience position within ASP.</p><p><strong>Aim: </strong>To critically reflect on the process of establishing a Lived Experience of child sexual abuse role in a Violence, Abuse and Neglect health service, and identify lessons for workforce development.</p><p><strong>Methods: </strong>A dialogical co-reflection approach was used, involving a Lived Experience worker, senior clinician, clinical coordinator, and two researchers. Over 6 months, fortnightly reflective sessions were conducted. Individual written reflections are presented to form a shared narrative of the experience of implementation.</p><p><strong>Results: </strong>The narrative highlights the transformative potential of Lived Experience roles in VAN, challenges of visibility and stigma, and the need for organisational readiness. Establishing trust, safety, and shared values was critical. Structural issues such as pay parity, scope clarity, and emotional load were identified as significant considerations. The Lived Experience role enhanced: survivor-informed practice, disrupted hierarchical norms, and fostered cultural change, but also highlighted the importance of relational and systemic support.</p><p><strong>Conclusion: </strong>Embedding Lived Experience roles in health services offers opportunities for systemic reform and improved survivor engagement. Success depends on organisational commitment, flexible role design, reflective supervision, and sustainable resourcing. Findings inform policy and practice for integrating Lived Experience positions across health systems.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70891"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633700/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Humanising Government Inquiry: A Realist Examination of a Restorative Approach to Surgical Mesh Harm in Aotearoa New Zealand.","authors":"Jo Wailling, Lesley Middleton, Graham Cameron, Carmel Berry","doi":"10.1111/hex.70897","DOIUrl":"10.1111/hex.70897","url":null,"abstract":"<p><strong>Background: </strong>Evidence is limited on how people experience government-commissioned inquiries, what they value about them, and the impacts of procedures. This study applies realist logic to examine the experiences of those designing and participating in a government-commissioned restorative approach to harm associated with surgical mesh use in Aotearoa New Zealand. Attention is paid to divergent perspectives about harm and responsibility, desired outcomes, and the multiple identities that shaped people's responses to the programme.</p><p><strong>Methods: </strong>Using mixed methods, data were collected from documents, interviews, surveys and a research diary to test and refine programme theories. Context-Mechanism-Outcome configurations were used to develop theoretical explanations of what worked, for whom, and in what contexts to mitigate, ameliorate, or generate compounded harm.</p><p><strong>Results: </strong>Compounded harm arises when the different ways individuals make sense of the cognitive, moral, and emotional significance of harm are overlooked. It may also arise when governments and providers do not proactively disclose the inherent risks of healthcare, or the trade-off between the ideal state and what is possible within constrained resources. Three mechanisms contributed to the restoration of dignity, wellbeing, and trust: collaborative and adaptive restorative design, dignifying storytelling, and responsiveness to the potentially traumatising nature of healthcare harm.</p><p><strong>Discussion: </strong>Findings underscore the critical importance of acknowledging the prevalence and lived experience of harm, nurturing basic and relational trust, including diverse perspectives, and remaining adaptable if public inquiries are to be effective. Practical recommendations for those commissioning public inquiries emphasise restorative strategies that foster dignity, wellbeing, trust and adaptability while balancing complexity, dynamic human needs, and institutional responsibilities.</p><p><strong>Lived experience and public contribution: </strong>Patients, families, whānau (extended family), and community representatives were involved in the design of the study, data collection tools, theory testing and refinement, development of the concept of compounded harm, and manuscript preparation.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70897"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13643949/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149129344","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How Uncertainty Is Talked About in Language Discordant and Concordant Health Consultations: Patterns of Epistemic Adverb Use and Communication Accommodation Strategies.","authors":"Vanda Nissen, Renata F I Meuter, Michelle Riedlinger","doi":"10.1111/hex.70873","DOIUrl":"10.1111/hex.70873","url":null,"abstract":"<p><strong>Introduction: </strong>In this study, we explored how uncertainty was expressed through epistemic adverbs in health consultations where patients and health practitioners (HPs) spoke the same language (language-concordant) versus when they did not (language-discordant). Further, we applied Communication Accommodation Theory (CAT) to identify, in these settings, how HPs used communication strategies and their patients' communicative responses.</p><p><strong>Method: </strong>Fifty-three health consultations between bilingual and monolingual patients and their HPs in a metropolitan emergency department were recorded and transcribed, 39 of which contained epistemic adverbs (e.g., probably, maybe). Epistemic adverbs were identified and classified, and the surrounding interactional sequences were analysed using CAT.</p><p><strong>Results: </strong>Analyses revealed overall greater use of uncertainty adverbs versus certainty adverbs. CAT-informed analysis identified approximation, discourse management, interpersonal control, emotional expression and interpretability when HPs or patients expressed uncertainty. HPs responded through clarification, reformulation, backchannelling and reassurance. However, in some cases, the interaction did not establish whether the expressed uncertainty had been fully resolved or understood.</p><p><strong>Discussion: </strong>In the analysed consultations, epistemic adverbs functioned as linguistic markers of uncertainty related to clinical information such as symptoms, timing and possible course of action. Although use of accommodative strategies was evident in all analysed excerpts, in some cases the available data could not confirm whether the bilingual patients had fully understood the information.</p><p><strong>Conclusion: </strong>Attending to patients' uncertainty as expressed through epistemic adverbs may help HPs accommodate more effectively to their patients' communicative needs.</p><p><strong>Patient or public contribution: </strong>Patients and members of the public were not directly involved in the design, conduct, analysis or reporting of this study. The research was based on the analysis of recordings of real-life clinical consultations. Because the study focused on evaluating communication patterns within existing consultation recordings rather than developing or testing interventions affecting patient care, additional patient or public involvement was not considered methodologically appropriate.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70873"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13573317/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148964039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Beyond the Meeting: Patient and Public Involvement Practices and Barriers to Inclusive Participation in Stroke Research.","authors":"David Wyatt, Sophie Rowland-Coomber, Eleanor Stevens, Christopher McKevitt, Madeline Cruice, Timothy Neate, Eva S Emmett, Matthew D L O'Connell, Charles Wolfe, Iain J Marshall","doi":"10.1111/hex.70903","DOIUrl":"10.1111/hex.70903","url":null,"abstract":"<p><strong>Background: </strong>Patient and Public Involvement (PPI) aims to embed patient perspectives in all aspects of health research. In stroke, where diverse impairments affect communication, cognition, and mobility, inclusive PPI is particularly critical yet challenging. Little is known about how stroke PPI is currently practised or what barriers researchers face in supporting the participation of stroke survivors with complex needs.</p><p><strong>Objectives: </strong>To understand how stroke PPI is currently structured and practised, what resources it requires, how research teams support stroke survivors with diverse impairments and what barriers exist to more inclusive practice.</p><p><strong>Methods: </strong>We conducted a national questionnaire with Principal Investigators of NIHR, UKRI and Stroke Association-funded stroke research projects active between October 2019 and January 2025 (31 responses representing 104/185 eligible projects). Open-ended questions elicited detailed accounts of PPI practices, resource requirements, adaptations to support diverse participation and barriers to inclusion. Data were analysed using qualitative description and thematic analysis, drawing on concepts of infrastructure to examine how the way PPI is organised shapes participation.</p><p><strong>Results: </strong>Four interconnected themes were identified. Despite considerable variation in scale and sophistication, the group meeting dominated PPI practice, functioning as taken-for-granted infrastructure through which involvement happens. Resource constraints, particularly unfunded coordination time and absent specialist communication support, limited what was viable. Researchers consistently reported lacking expertise to support stroke survivors with severe impairments, relying heavily on carers whose involvement sometimes functioned as proxy representation. While participants demonstrated creativity and commitment, PPI groups remained predominantly 'white, middle class, and [with] minor stroke severity', with innovation not leading to more inclusive participation.</p><p><strong>Discussion: </strong>Group meetings dominate stroke PPI, but they systematically exclude stroke survivors whose impairments make participating in meetings difficult. Achieving inclusive stroke PPI requires not merely adapting meetings but reimagining participation infrastructure, adequately resourcing diversity work and addressing expertise gaps through multidisciplinary support.</p><p><strong>Lived experience or public contribution: </strong>This research was informed by prior workshops with stroke survivors and carers from two PPI groups, who identified barriers to PPI participation and emphasised the need for methods to support more severely affected stroke survivors. Stroke survivors shaped questionnaire content and helped refine the findings and themes.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70903"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13639546/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Facilitators and Barriers to Participating in an Integrated Knowledge Translation Panel for a Consensus-Building Initiative.","authors":"Simran Jawanda, Alene Toulany, Tomisin John, Dorothy Luong, Megan Agnew, Sarah E P Munce","doi":"10.1111/hex.70875","DOIUrl":"10.1111/hex.70875","url":null,"abstract":"<p><strong>Background: </strong>Patient engagement is a critical component of high-quality research. When implemented intentionally, partnerships with patient partners and other knowledge users ensure that research findings are relevant and meaningful to intended users. Integrated knowledge translation (iKT) is a collaborative approach that supports a bidirectional partnership between researchers and knowledge users throughout the research process.</p><p><strong>Objective: </strong>This study aimed to examine the experiences and identify the facilitators and barriers to participating in an iKT panel for a consensus-building study.</p><p><strong>Methods: </strong>A qualitative descriptive study using semi-structured interviews was conducted with members of the iKT panel, including youth, caregivers, healthcare providers, and health system leaders. The Patient Engagement in Research Scale (PEIRS-22) was used to assess the degree of meaningful engagement. Data were analysed using a descriptive thematic approach.</p><p><strong>Results: </strong>Eleven panel members (3 youth, 2 caregivers, 2 healthcare providers, and 4 health system leaders) participated. Among the 10 participants who completed PEIRS-22, the mean total score was 88.3 (SD = 10.5), with most reporting very or extremely meaningful (70%) level of engagement. Five overarching themes capturing the facilitators and barriers influencing panel members' engagement were identified. Facilitators included clear and consistent communication, strong trust in and support from the research team, an inclusive and empowering environment, accessible and flexible participation options, and meaningful involvement that promoted a sense of value and connection. Key barriers included communication burden, power dynamics among panel members, competing commitments, technology challenges, and mismatched expectations.</p><p><strong>Conclusion: </strong>Engagement through an iKT approach is a complex, relational process that requires strong communication, intentional structures, and a supportive environment. Findings highlight the importance of fostering interpersonal relationships among diverse knowledge users to enhance collaboration and strengthen engagement.</p><p><strong>Patient and public contribution: </strong>Members of an iKT panel for a larger consensus-building research study were participants in this evaluation. Findings will be shared with panel members to inform and refine engagement strategies for future research activities.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70875"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13617305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149070605","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Inequalities Shaping Engagement With Cultural and Green Assets to Improve Mental Health for Underserved Communities: A Qualitative Study.","authors":"Francesca Taylor, Tushna Vandrevala, Silke Zschomler, Meg Jensen, Ima Miah, Catherine Dawkins, Eneida Capaldi, Anna Bosher, Louise Bloom, Maria Chatzichristodoulou","doi":"10.1111/hex.70912","DOIUrl":"10.1111/hex.70912","url":null,"abstract":"<p><strong>Introduction: </strong>Underserved communities including ethnic minorities, refugees and migrants, experience higher mental health needs than the general population, yet engage less with cultural and green community assets (CGCAs) that could support wellbeing. While access barriers are known, less is understood about the cultural meanings and processes underpinning inequalities shaping engagement. This study examined the cultural drivers and mechanisms of these inequalities and how they might be addressed to improve mental health.</p><p><strong>Methods: </strong>A multi-site qualitative study in England with community voice champions (CVCs) recruited through five underserved community organisations. A lived experience storytelling methodology with thematic analysis was used, informed by a theoretical model of cultural processes and causal pathways to inequality. Twelve workshops were held, following which CVCs collected community stories.</p><p><strong>Results: </strong>Twenty-seven CVCs participated and collected 147 stories. Symbolic, place-based and material inequalities emerged across three themes: cultural influences on mental health; unknown spaces and unfriendly environments; and creating spaces of safety and belonging. Even when CGCAs were available and known, racial stigmatisation and cultural dissonance reinforced exclusion. Community-led initiatives, facilitation and peer support helped make CGCAs safer and more welcoming.</p><p><strong>Conclusions: </strong>Engagement with CGCAs is not only about access, but a negotiated process shaped by intertwined inequalities. Nevertheless, these inequalities are not fixed. Community-led activities grounded in trust and collective action can transform exclusionary environments into inclusive ones to support mental health.</p><p><strong>Patient or public contribution: </strong>Community organisation leads contributed to study design, participant recruitment and support, data interpretation, and are co-authors. CVCs participated in workshops, collected and interpreted data, and validated findings.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70912"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13648020/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149139505","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of Co-Production in Adolescent Health Research: A Mixed Methods Study From Born in Bradford.","authors":"David Ryan, Adam Whitehead, Amelia Hudak, Edie Lee, Isobel Dowling, Jennie Ellul, Jennifer Ingram, Katy A Shire, Shahid Islam, John Wright, Rosemary R C McEachan","doi":"10.1111/hex.70876","DOIUrl":"10.1111/hex.70876","url":null,"abstract":"<p><strong>Background: </strong>Co-production is often viewed as best practice for involving the public in research, while measures such as sharing power, reciprocity, and relationship-building are seen as key guiding principles. However, implementing co-production and its underlying principles remains challenging, with limited evaluative work examining how these principles are applied in practice, particularly within large-scale studies and with young people. This study aimed to explore whether Born in Bradford's (BiB) co-production values and principles have been embedded in BiB Age of Wonder (AoW), a longitudinal study following over 20,000 Bradford teenagers through secondary school and into early adulthood.</p><p><strong>Methods: </strong>This evaluation used a mixed-methods approach. Participants included parents, young people, teachers, and community members. Quantitative data was collected via an online survey (n = 79). Qualitative data was collected via four focus groups (n = 17). The survey and focus group topic guide were co-designed with young people, with questions designed to assess how well the principles and values of BiB's co-production strategy had been embedded in AoW. Descriptive statistics were used to explore the survey responses. Qualitative data was analysed using framework analysis.</p><p><strong>Results: </strong>Survey and focus group findings indicated that co-production group members mostly agreed or strongly agreed that the nine principles of co-production had been embedded in AoW. However, 'sharing power' and 'community engagement' were found to be areas that could be improved, with participants calling for earlier involvement in research design, clearer feedback loops, and outreach beyond existing groups.</p><p><strong>Conclusions: </strong>We found evidence that the values and principles of co-production have been embedded in AoW co-production. Suggestions for improvement include shaping research agendas through earlier involvement, deeper engagement with schools and communities, and paid peer research posts. Future steps include (1) developing sustainable peer research strategies to deepen co-production, and (2) incorporating perspectives from diverse stakeholders including budget holders, facilitators, researchers and public contributors in future evaluations.</p><p><strong>Patient or public contribution: </strong>Members of the public were involved in the study conceptualisation, methods development and implementation. The survey and focus group topic guide were co-designed with young people from BiB Age of Wonder co-production groups. Co-production group members were also involved as participants in the surveys and focus groups.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70876"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13670425/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197933","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}