Health Expectations最新文献

{"title":"Barriers and Enablers to Capsule Sponge Screening Among People With Heartburn: A Community-Based Qualitative Study in the UK","authors":"Ninian Schmeising-Barnes,&nbsp;Emma Lidington,&nbsp;Elisavet Moschopoulou,&nbsp;Daksha Trivedi,&nbsp;Jo Waller","doi":"10.1111/hex.70919","DOIUrl":"10.1111/hex.70919","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Non-endoscopic capsule sponge devices are a promising new technology. They could potentially improve oesophageal cancer outcomes by detecting and monitoring Barrett's oesophagus and identifying dysplasia early to allow timely treatment. Trials assessing their clinical utility are underway.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>This study sought to understand potential barriers and enablers to capsule sponge screening among people with heartburn.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Forty semi-structured interviews were conducted between October 2024 and April 2025 with men aged 55–79 and women aged 65–79 taking regular reflux medication. Participants were purposively sampled. Transcripts were analysed using Thematic Framework Analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants were generally enthusiastic about the test, but not all felt willing or able to take part. Key factors influencing their attitudes are described in three overarching themes. First, participants described how they navigate reflux-related care and negotiate this with healthcare professionals. They considered how capsule sponge screening would fit into this collaborative model. Second, participants showed an aversion to uncertainty, noting that capsule sponge screening could both create and reduce uncertainty about their health. Third, participants' understanding of their candidacy varied based on risk perceptions, self-efficacy and views about acting on test results. Some expressed a sense of being less ‘worthy’ candidates than others.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Overall, the capsule sponge test screening appealed to many due to its quick, simple and minimally invasive approach. Nevertheless, concerns about responsibility for reflux care, candidacy and uncertainty will likely shape attitudes and intention towards the test and should be key considerations if this test is implemented.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Lived Experience or Public Contribution</h3>\u0000 \u0000 <p>Three individuals with lived experience of reflux, Barrett's oesophagus and oesophageal cancer were involved in the design of this study and associated materials.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70919","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197815","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":"Negotiating Reproductive Identity After Cancer: A Qualitative Systematic Review of Female Survivors' Post-Treatment Fertility Experiences.","authors":"Yijun Wang, Margo Louise Turnbull, Jeffry Oktavianus, Xiaoyan I Wu","doi":"10.1111/hex.70811","DOIUrl":"10.1111/hex.70811","url":null,"abstract":"<p><strong>Background: </strong>Fertility concerns are common among female cancer survivors and are shaped by sociocultural influences that extend beyond biomedical outcomes. Previous systematic reviews have consolidated evidence on fertility-related distress but have tended to operate within clinical or descriptive frameworks. Although identity-related findings have emerged in existing reviews, they received limited conceptual attention.</p><p><strong>Objective: </strong>Guided by the concept of reproductive identity, this review systematically synthesises qualitative research on how female cancer survivors experience, negotiate, and reconstruct their reproductive identities within the broader context of post-cancer survivorship.</p><p><strong>Methods: </strong>A systematic search was conducted in eight databases for qualitative studies published in English and Chinese between January 2010 and February 2026. The review followed PRISMA guidelines and was prospectively registered in PROSPERO (CRD42024604353). Data were synthesised using thematic synthesis, with coding conducted inductively before the reproductive identity framework was applied as an interpretive lens.</p><p><strong>Results: </strong>Thirty studies met the inclusion criteria. Three analytical themes were identified: (1) macro-level discourses and structures shape reproductive identity-fertility is positioned as secondary to survival within cancer care and constrained by sociocultural motherhood narratives; (2) micro-level relational dynamics and internal processes shape reproductive identity-fertility concerns are navigated within intimate relationships and through ongoing (re)working of reproductive selfhood; and (3) lived experience informs the reimagining of macro-level care-participants' experiences of structural constraints generated insight into how care systems could better support reproductive identity across survivorship.</p><p><strong>Conclusion: </strong>The findings of this review highlight that post-cancer fertility is a dynamic process of identity negotiation shaped by the interplay between macro-level discourses and micro-level relational and internal processes. This reinforces the importance of embedding reproductive identity literacy into survivorship care through proactive, clinician-initiated fertility conversations and coordinated referral pathways that extend beyond the treatment phase.</p><p><strong>Patient and public contribution: </strong>Patient and public involvement were not formally incorporated into this review. However, the first author is a female cancer survivor with lived experience of fertility preservation, whose patient perspective contributed to the development of the research, the interpretation of findings and the framing of implications for survivorship care.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13686586/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149240578","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":"Embedding Consumer-Led Research in a Comprehensive Cancer Centre Alliance: A Mixed-Methods Evaluation.","authors":"Lucy Boyd, Claire Nightingale, Brad Astbury, Natalie Diepenhorst, Leslie Leckie, Michelle Barrett, Joanne M Britto, Simonne Neil, Tessa Saunders","doi":"10.1111/hex.70859","DOIUrl":"10.1111/hex.70859","url":null,"abstract":"<p><strong>Introduction: </strong>As consumer involvement becomes increasingly recognised as an important part of health and medical research, new ways to involve consumers are actively being explored. This evaluation aimed to investigate the experience of consumers and other stakeholders involved in two pilot consumer-led research projects within a comprehensive cancer alliance.</p><p><strong>Methods: </strong>The evaluation consisted of program document review, an online survey and individual interviews to explore the experience of a range of stakeholders. Analysis was via a convergent mixed methods approach.</p><p><strong>Results: </strong>Overall, 12 consumer participants and 11 other non-consumer stakeholder participants took part in the evaluation. An in-depth narrative of participants' experiences was developed, from which five key components of effective consumer-led research were identified: (1) Organisational commitment to consumer involvement at all levels, (2) appropriate time and resources, (3) training and education, (4) clearly defined roles and responsibilities, and (5) an ecosystem that values individuals and creates a cohesive group dynamic. While the two pilot projects shared similarities, their iterative and sequential nature enabled learnings from the first to be applied in real time to the second. Overall, the experience of the programs was positive, with both consumers and other stakeholders rating the pilots as successful and stating they were highly likely to recommend the program to others.</p><p><strong>Conclusion: </strong>This evaluation illustrated that the implementation of a framework for consumer-led research pilot projects was perceived positively and enhanced consumer leadership in the research process. Additionally, it identified areas where power and decision-making could be more evenly shared, thereby enhancing consumer leadership in the research process.</p><p><strong>Patient or public contribution: </strong>People with lived experience of cancer (including service users and caregivers) were involved in this evaluation in two ways. First, two consumers were part of the Victorian Comprehensive Cancer Centre Alliance evaluation team (L.L. and N.D.) and helped design the evaluation plan and data collection tools and reviewed findings and draft reports. N.D. contributed to the manuscript write-up. Second, consumers who were part of the two pilot projects and had roles in consumer-led research projects (n = 17) were invited to participate in the evaluation activities (online survey and/or interview) to share their experience. These consumers were also invited to an online feedback session with the evaluation team to sense-check and confirm the evaluation findings prior to finalisation.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70859"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13554987/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148914467","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":"Indicator Development for the Evaluation of User-Researcher Collaboration in Health Research: A Co-Designed, Modified Delphi-Study.","authors":"Lotte Verweij, Judith Safford, Saskia Oesch, Myrta Kohler, Thomas Zurbrügg, Tanja Brülhart, Marion Jourdan, Cristina De Biasio Marinello, Rahel Naef","doi":"10.1111/hex.70880","DOIUrl":"10.1111/hex.70880","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Introduction: &lt;/strong&gt;Partnering with patients, close others and the public (users), termed patient and public involvement and engagement (PPIE), is essential to ensure relevant and impactful health research. To date, definitions of effective collaborations between users and researchers to plan and evaluate such collaborations are scarce. Therefore, building consensus on what makes user-researcher collaborations effective and genuine is an important step. The goal of this co-designed study was to define and establish expert agreement on key quality indicators for the evaluation of such partnerships in health research.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We conducted a three-round modified Delphi-study (12/2023 - 07/2024). The first round included a participatory expert workshop with seven users and seven researchers, facilitated by two citizen science experts, to discuss and identify potential indicators, which were then refined by four user-researcher delegates. In the second round, these indicators were assessed in a survey among the workshop participants for their relevance, clarity and completeness. In the final round, three user-researcher delegates operationalized the redefined and reduced indicators, which were assessed for their relevance, clarity and ease of response in another survey with an extended group of 24 users and researchers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The participatory expert workshop resulted in a set of 35 potential indicators. In the first survey (response rate 11/14), suggestions were made to optimise the indicator's clarity and completeness, and 5/35 indicators were considered (partially) redundant. Hence, indicators were merged, redefined, and formulated into 30 statements. In the second survey (response rate 13/24), indicators were evaluated as partly or fully relevant, with some suggestions to optimise clarity and make indicators easier to respond to (ease of response). The 30 quality indicators were subsequently categorised around structures (n = 9), processes (n = 9) and outcomes (n = 12) of PPIE.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;In this co-developed, modified Delphi-study, we brought user and researcher expertise together to identify and reach expert consensus on key indicators to evaluate user-researcher collaboration in health research. This study resulted in an operationalized set of indicators relevant to both users and researchers using PPIE in health research. Next, the proposed indicators and their operationalization should be validated in practice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;This study was co-designed and co-conducted by the patient and family member advisory board and health researchers of the Family Support in Intensive Care Units (FICUS) trial. The patient and family member advisory board includes a patient expert (TZ) and three family member experts (TB, MJ, CdBM) with lived expertise in the field of critical illness or trauma, and is led by JS, who is an experi","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70880"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13591234/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149013319","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":"Designing a Peer Navigation Program Alongside Women With Lived Experience of Domestic, Family, and Sexual Violence.","authors":"Zoe King, Heshani Samantha De Silva, Katie Alexander, Liz John, Shiana Harris, Teresa, Renee Fiolet, Sally Connell, Sally Nathan, Ruth Wells, Kelsey Hegarty, Patricia Cullen","doi":"10.1111/hex.70877","DOIUrl":"10.1111/hex.70877","url":null,"abstract":"<p><strong>Background: </strong>Domestic, family, and sexual violence (DFSV) is a significant public health issue. There are currently large gaps in prevention, early intervention, and longer-term recovery and healing support for victim-survivors of DFSV. Implementing peer navigation programs to support victim-survivors has the potential to address some of these gaps. Yet there is a lack of current research on the components necessary to implement these programs, including in primary care settings.</p><p><strong>Objective: </strong>To develop core components of a DFSV peer navigation program tailored to primary care settings.</p><p><strong>Methods: </strong>A participatory design approach bringing together women with lived experience of DFSV, health practitioners, and researchers.</p><p><strong>Results: </strong>We designed five core components of a peer navigation program: (1) Walking Alongside: Peer-Informed Relational Care; (2) Peer Navigation as Practical Support; (3) Safe and Ethical Practice in Peer Navigation; (4) Role Clarity and Boundary-Setting; and (5) Organisational Supports for Peer Navigation Practice. In presenting these results, we also highlight reflections on our design process.</p><p><strong>Conclusion: </strong>The implementation of peer navigation programs for victim-survivors can provide survivor-centred relational and practical support. Ensuring effective implementation of peer navigation programs must address key challenges, particularly in ensuring safety and wellbeing of victim-survivors and peer navigators through DFSV-informed primary care practice. These findings can inform the implementation of peer navigation programs for victim-survivors to promote care that prioritises trusting relationships, agency, and pragmatic support.</p><p><strong>Patient or public contribution: </strong>This research centred the lived expertise of victim-survivors. We established a Working Group of women with lived experience of DFSV, health practitioners, and researchers to design the components of a peer navigation program, using our lived, living, and learned (professional) expertise. Women with lived experience were involved in the study design, as members of the Working Group, and in manuscript authorship.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70877"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13598425/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149026782","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":"Irish Travellers' Cancer Awareness and Engagement With Prevention, Screening and Early Diagnosis: A Qualitative Study of Barriers and Enablers.","authors":"Kate Frazer, Regina Joye, Patricia Fitzpatrick, Reuel Jalal, Mary Brigid Collins, Lynsey Kavanagh, Abigail Murfitt, Brigid Quirke, Una Kennedy, Triona McCarthy, Maria McEnery, Aine Lyng, Patricia Fox","doi":"10.1111/hex.70866","DOIUrl":"10.1111/hex.70866","url":null,"abstract":"<p><strong>Background: </strong>Irish Travellers are a distinct minority ethnic group with a long tradition of nomadism on the island of Ireland. Travellers have a significantly reduced life expectancy and experience greater health inequalities. Limited evidence describes how cancer awareness and engagement with prevention, screening and early diagnosis are shaped by structural and service contexts.</p><p><strong>Methods: </strong>This qualitative study was undertaken as part of a larger multi-method study co-developed with the Health Service Executive, National Cancer Control Programme, National Social Inclusion Office, and Pavee Point Traveller and Roma Centre- a human rights advocacy and Irish Non-Governmental Organisation (NGO). The study aimed to understand cancer awareness and attitudes among Irish Travellers, identify barriers and enablers to cancer risk reduction behaviours and early diagnosis of cancer. In-person interviews were completed with 22 adult Irish Travellers (18 individual interviews and two group interviews with two participants each) and were transcribed verbatim and analysed using collaborative reflexive thematic analysis.</p><p><strong>Results: </strong>Four themes described the interactions between everyday structural disadvantage, culture, privacy, fear and family roles; systems-level barriers; and Traveller-led and service-level enablers. Awareness did not always translate into an opportunity to act. Racism and discrimination, literacy barriers, living conditions, limited service choice, inaccessible communication and inflexible appointment systems constrained engagement. Pride in Traveller identity, trusted relationships, Traveller Community Health Workers, accessible information and culturally safe services supported engagement.</p><p><strong>Conclusions: </strong>Improving cancer awareness requires more than individual behaviour change. Equitable engagement with prevention, screening and early diagnosis depends on anti-racist, accessible and flexible mainstream services developed in partnership with Travellers and their organisations. Traveller Community Health Workers are a major strength, and their expertise should be harnessed within health systems.</p><p><strong>Patient and public contribution: </strong>The study was co-developed with Pavee Point Traveller and Roma Centre, who are represented as co-authors on the paper and were members of the study working group. They took part in all aspects of the study, including providing anti-discrimination training, recruitment, interpretation of findings, and providing lived-experience expertise throughout the drafting of the paper.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70866"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13594775/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149018886","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":"Women's Experiences of Recurrent UTIs: A Qualitative Study of Preventive Management and Decision Support Needs.","authors":"Catherine V Hayes, Donna M Lecky, Haroon Ahmed, Rebecca Cannings-John, Adrian Edwards, Fiona Wood, Leigh Sanyaolu","doi":"10.1111/hex.70890","DOIUrl":"10.1111/hex.70890","url":null,"abstract":"<p><strong>Introduction: </strong>Recurrent urinary tract infections (rUTIs) are common in women and significantly impact their daily lives. Prophylactic antibiotics are the primary preventive option for rUTIs when other options have been unsuccessful, but their use can increase the risk of antimicrobial resistance. This study aimed to explore women's experiences of rUTIs and the support needed to make decisions about prevention and management.</p><p><strong>Methods: </strong>Qualitative focus groups were conducted with 25 women with self-reported rUTIs, discussing hypothetical vignettes related to rUTI management. Topic guides were co-produced with women with lived experience and informed by the Theoretical Domains Framework (TDF). Data were analysed thematically.</p><p><strong>Results: </strong>Themes included: (1) Recurrent UTIs are a debilitating condition, (2) Current healthcare does not support women with rUTIs, (3) 'Why is this happening?' (4) Preventive options are frequently tried with varying success and (5) Greater support is needed for women with rUTIs. Overall, women experienced rUTIs as a chronic condition and believed it should be managed with greater continuity. Women experienced stigma attached to rUTI, exacerbated by repeated discussions about hygiene from healthcare professionals (HCPs). Women had concerns around antibiotic use but were reluctant to stop prophylaxis if it was effectively preventing rUTIs; a contingency plan to address potential recurrences could help. Women reported mixed success with non-antibiotic strategies but were interested in trialling these with greater guidance from HCPs.</p><p><strong>Conclusion: </strong>Improved management of rUTI requires greater continuity and proactive discussions on prevention, including better support for discussions on risks and benefits to enhance shared decision-making.</p><p><strong>Patient or public contribution: </strong>Four female public contributors with experience of rUTI were involved from study planning to completion. They helped co-develop the topic guide vignettes, suggested potential recruitment routes and commented on the interpretation of themes in the context of their lived experience.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70890"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633698/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118909","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":"Exploring Women's Experiences of Work Participation During Breast Cancer Treatment: A Qualitative Study.","authors":"Lucia Cadorin, Anna Fortin, Sonja Cedrone, Jessica Longhini, Matteo Danielis","doi":"10.1111/hex.70929","DOIUrl":"https://doi.org/10.1111/hex.70929","url":null,"abstract":"<p><strong>Background: </strong>Breast cancer and its treatments significantly affect women's daily functioning, including their ability to engage in work. While return to work has been widely studied as an outcome, less is known about how work participation is experienced and negotiated during active treatment, particularly in relation to patients' functioning and support needs.</p><p><strong>Aim: </strong>The aim of this study was to explore how women with breast cancer experience and make sense of work participation while undergoing treatment.</p><p><strong>Methods: </strong>A descriptive phenomenological study was conducted with 19 women receiving treatment for breast cancer at three hospitals in northeastern Italy. Data were collected through semi-structured interviews and analysed using Colaizzi's seven-step method.</p><p><strong>Results: </strong>Two main themes emerged: (1) 'The individual-focused nature of work experience,' comprising three subthemes: personality traits shaping work perspectives, personal adaptation processes, and work as a source of emotional normality and identity continuity. (2) 'Receiving support from the external context,' including compassionate support acknowledging vulnerability and organisational adjustments facilitating work participation.</p><p><strong>Conclusions: </strong>Work participation represents a clinically relevant dimension of breast cancer care, reflecting the interplay between symptom burden, functional capacity, and psychosocial well-being. Integrating work-related considerations into routine clinical practice may support more comprehensive and responsive care during active treatment.</p><p><strong>Patient or public contribution: </strong>No patients or members of the public were involved in the design or conduct of the study. Participants contributed through individual interviews, and three subsequently took part in member checking of the preliminary thematic structure to enhance the credibility of the findings.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13689715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149247614","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":"Grandma's House: A Community-Led Partnership With University Researchers Drawing on Cultural Heritage Approaches to Support Research Development.","authors":"Adele Horobin, Monica Tucker, Shanine Fasasi, Gemma Poole, Khadiyo Hassan, Insa Hussain, Joanne R Morling","doi":"10.1111/hex.70932","DOIUrl":"10.1111/hex.70932","url":null,"abstract":"<p><strong>Background: </strong>In African-Caribbean culture, the grandmother occupies a central moral and social position, a matriarch. In the context of community engagement, this imagery serves as a metaphor for relational and cultural intelligence in partnerships. At the suggestion of local community members, we sought to leverage this to form a community research partnership.</p><p><strong>Objective: </strong>We describe, critically review and outline the key learning points from the first year of delivering Grandma's House.</p><p><strong>Methods: </strong>The extended appreciative inquiry cycle (Define, Discover, Dream, Design and Destiny) was used to co-produce Grandma's House. Each stage was explored through meetings and workshops with community members to support the delivery of pilot events. The approach was continuously evaluated through event feedback and a final broad stakeholder meeting, where a review and SWOT analysis were conducted.</p><p><strong>Results: </strong>Grandma's House successfully replicated the traditional African-Caribbean generation-to-generation support model. Five pilot events were successfully delivered in a range of local community settings. Key strengths were identified as collective learning and knowledge sharing; active community engagement through heritage; and building community-university relationships. Weaknesses included the challenge of funding and university inflexibility to align with community preferences.</p><p><strong>Discussion: </strong>We successfully implemented a unique approach to facilitate a critical shift in the role of community members in leading collaborations in health research and practice. Grandma's House worked because it came from the community, beginning with cultural pride rather than community need.</p><p><strong>Public contribution: </strong>The public were the originators and drivers of this project, involved in every aspect and leading the majority. They supported the design, implementation, reflections and manuscript writing.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13711016/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149277390","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":"Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.","authors":"William Lammons, Lily Arnold, Sarah Mcmullen, Fiona Aspinal, Samina Begum, Katherine Barrett, Kate Walters, Andrew Clegg, Stuart Mackay-Thomas, Sara Humphrey, Danielle Nimmons","doi":"10.1111/hex.70872","DOIUrl":"10.1111/hex.70872","url":null,"abstract":"<p><strong>Introduction: </strong>'Frailty' as a concept is being increasingly integrated into healthcare, but the language around frailty is contentious and potentially stigmatising to patients. It is therefore important to understand how patients' lived experiences relate to the concept of frailty. We conducted 3 creative patient and public involvement (PPI) workshops to support the study, 'Exploring how the Electronic Frailty Index 2 (eFI2) can be best utilised in clinical practice.' Our aims for these workshops were to 1) improve our eFI2 project topic guide and data analysis 2) explore whether creative PPI can support engagement with contentious concepts like frailty, and 3) to understand how frailty can be communicated to patients.</p><p><strong>Methods: </strong>Creative PPI offers a means of addressing the shortcomings and challenges of PPI, including tokenism, accessibility, and inclusivity, by allowing patients and members of the public to contribute in different, individual, and non-discursive ways. We used group blackout poetry writing and quilt-making as creative PPI approaches to understand how patients relate to 'frailty.' We collaborated with PPI networks affiliated with the NIHR Applied Research Collaborations (ARCs) and a South Asian community organisation to recruit participants and used public collaborators to co-design and -deliver activities. We used qualitative thematic reflections to share findings from these activities.</p><p><strong>Results: </strong>Twenty-two people attended three creative PPI workshops (two blackout poetry activities and one quilt-making activity). These activities provided three types of findings: 1) the impacts of the creative PPI activities on the eFI2 research process, 2) three thematic reflections, 'difficulties with 'frailty' as a term and concept,' 'personalising 'frailty' in patient communications,' and 'time pressures and dysfunction in healthcare services;' and 3) the creative outputs (text of two poems and an image of the quilt).</p><p><strong>Conclusion: </strong>Research and healthcare professionals should work towards discussing frailty with patients in terms and concepts that reflect their experiences and understanding and consider their overall health. Future research and PPI should focus on diverse cultural perspectives on frailty.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70872"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13573230/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148964009","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}