Health Expectations最新文献

{"title":"Creating a Measure of Shared Decision-Making for Healthcare Decisions With Aboriginal and Torres Strait Islander People: A Hybrid Yarning and Modified Delphi Study","authors":"Marguerite Tracy, David Follent, Emma Webster, Tara Dimopoulos-Bick, Lyndal J. Trevena, Melissa Cawley, Michelle Dickson, Heather L. Shepherd","doi":"10.1111/hex.70943","DOIUrl":"https://doi.org/10.1111/hex.70943","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Shared decision making (SDM) is a process which involves an exchange of information between healthcare professionals and patients about options (including watch and wait) and the patient's preferences. It is recognised as an important part of person-centred health care and is part of national standards for delivery of care in Australia. SDM improves health outcomes and SDM resources specifically designed with and for Aboriginal and Torres Strait Islander communities are increasingly available. However, there is no culturally appropriate measure to evaluate the SDM process and the impact of these resources. The objective was to create a culturally safe measure of SDM for Aboriginal and Torres Strait Islander people and communities using the nine-item SDM-Q-9 as a starting point.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A purposively invited expert panel of Aboriginal and Torres Strait Islander Health Professionals and Community members and experts in SDM attended a hybrid yarning briefing session incorporating yarning (a cultural approach to dialogue). The panel then participated in a two round online survey Delphi process. Study team members reviewed the yarning session, developed themes to apply to questions for the Delphi rounds. Team members analysed and reported results of each round to participants and proposed the final measures based on feedback in each round.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eighteen of 26 invited participants attended the yarning briefing session and 14 participated in both Delphi rounds. Consensus was reached for a measure with 12 items, their wording and the cultural concepts supporting each. The resulting measure included new wording for all items and the addition of three items. From the yarning session the need for a short measure resulted in a proposed five-item version of the measure with the basic aspects of SDM was also agreed on in the Delphi process. Both measures will continue for next stage testing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Using a hybrid yarning and Delphi method resulted in a culturally adapted measure of SDM. Validation and real-world testing of the measure are planned for the 12- and 5-item version created.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>Once validated, this co-created culturally responsive measure will be used to assess the efficacy of processes and tools to support shared decision making with A","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 6","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70943","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149259479","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":"Assessing the Categories and Factors Influencing Treatment Decision Conflict in Patients With Lumbar Disc Herniation: A Latent Profile Analysis","authors":"Yuan Tian, Bing-Lin Li, Ming-Kui Shen, Shi-Na Cheng, Xiao-Wei Jia, Shao-Hua Chen","doi":"10.1111/hex.70924","DOIUrl":"https://doi.org/10.1111/hex.70924","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Lumbar disc herniation (LDH) represents a prevalent degenerative spinal disorder, characterized by severe pain and functional limitations that significantly diminish patients' quality of life. Despite the availability of conservative and surgical treatment options, patients frequently encounter considerable decisional conflict (DC). Current research often neglects the inherent heterogeneity within this patient population. To ensure that the research questions and outcome measures reflect patients' real-world priorities, we involved patients with LDH in the study design phase. This study employs latent profile analysis (LPA) to identify distinct patterns in treatment decision-making and examine their underlying factors, thereby providing a scientific basis for personalized clinical decision support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This cross-sectional study involved 743 patients diagnosed with LDH. Patients and public were involved in refining the questionnaire content and validating the relevance of outcome measures. The data collection tools included a General Information Questionnaire, the Decisional Conflict Scale (DCS), the Health Belief Scale, and the Treatment Expectancy Questionnaire. Influential factors were identified through univariate analyses and multinomial logistic regression. LPA was used to identify latent profiles and delineate their unique characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three distinct latent profiles emerged: the low-DC group (23.55%), the moderate DC group (44.55%), and the high-DC group (31.90%). Multinomial logistic regression analysis indicated that factors such as gender, marital status, educational attainment, type of medical insurance, employment status, annual household income, place of residence, and clinical history (including duration since onset and prior consultations) significantly influenced membership in these profiles. Additionally, treatment expectations and health beliefs were identified as critical psychological predictors of DC.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Patients with LDH exhibit substantial heterogeneity in treatment DC, classified into low, moderate, and high-conflict groups via latent profile analysis, with over 70% experiencing moderate to high DC. DC in patients with LDH is influenced by multidimensional factors, including sociodemographic characteristics, clinical features, health beliefs, and treatment expectations, with health beliefs and treatment expectations acting as core protective factors.","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70924","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149206009","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":"Acceptability of a Peer-Led Faith-Based Intervention to Improve Breast, Bowel and Cervical Cancer Screening Uptake Among UK Muslim Women: A Qualitative Evaluation","authors":"Rawand Jarrar, Kathryn A. Robb, Marie K. Murphy, Cerysh Sadiq, Anna Matthews, Fozia Haider, Alex McConnachie, Aasim I. Padela, Floor Christie-de Jong","doi":"10.1111/hex.70935","DOIUrl":"10.1111/hex.70935","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Early cancer detection through screening can improve treatment outcomes. However, screening uptake remains lower among some communities, including Muslim women, which puts them at risk of late diagnosis and poor outcomes. In 2020, we worked with 10 Scottish Muslim women to co-design a peer-led, faith-based and culturally tailored intervention to encourage uptake of breast, bowel and cervical cancer screening. The intervention was delivered twice online and qualitatively evaluated. The study was subsequently funded as a feasibility trial, and the intervention was delivered a further 16 times, both online and face-to-face. This paper reports findings from a qualitative evaluation exploring participants' perspectives on the acceptability and implementation of the intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The intervention is a 2-h workshop comprising four components: (1) a peer-led cancer screening discussion, (2) a doctor-led health education session, (3) testimonials from Muslim women, and (4) an Islamic perspective delivered by a female religious scholar. In 2024, women participated in online or in-person workshops in North-East England and Scotland. After each workshop, women were invited to participate in focus groups or interviews to provide feedback on the workshop. Qualitative data collection and analysis were guided by the Theoretical Framework of Acceptability. Data were analysed using the Framework Analysis method.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A convenience sample of 36 women was recruited. Participants described the workshop's content as comprehensive and providing new information. The workshop's informal atmosphere and use of different delivery methods enhanced information attainment. They appreciated the use of interpreters, who assisted non-English speakers. Bringing a medical and Islamic perspective together was novel to participants and made the workshop more impactful. Participants expressed more positive attitudes towards screening after the intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A peer-led, culturally-tailored and faith-based intervention for improving cancer screening uptake for Muslim women was deemed acceptable. However, more work is needed to assess the intervention's effectiveness and impact.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The intervention was co-designed with 10 Muslim women. A public involve","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70935","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197838","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":"Losing Sleep, Gaining Weight? Young Bangladeshi Adults' Perceptions of Sleep, Eating and Body Weight: A Qualitative Study","authors":"Mst Sabrina Moonajilin, Rajib Ul Islam, Labina Taher, Fariha Noshin, Tabeen Taher, Sabkat Kamal","doi":"10.1111/hex.70933","DOIUrl":"10.1111/hex.70933","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Inadequate sleep and excess body weight are escalating global health concerns, especially among young adults facing academic pressures, digital lifestyles, and cultural norms. While quantitative research has shown links between sleep and body weight, little is known about the lived experiences shaping this relationship in Asian contexts.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative study was conducted in urban Dhaka, Bangladesh, in 2022. Twenty-six young adults aged 18–25 years were recruited through purposive and snowball sampling methods. Semi-structured, in-depth interviews were conducted in Bangla, audio-recorded, transcribed verbatim, and translated into English. Thematic analysis was performed using an inductive approach, supplemented by deductive coding based on the socio-ecological model (SEM).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Five key themes emerged: (1) structural and environmental conditions disrupting sleep; (2) digital night culture and socially reinforced wakefulness; (3) the prioritisation of productivity over sleep; (4) unequal burdens of household labour and caregiving and opportunities for rest; and (5) perceived associations between irregular sleep, fatigue, and eating behaviours. Young adults described poor sleep as both a personal and structural issue and perceived connections with body weight and overall wellbeing. Across the identified themes, sleep and eating practices that appeared individual were embedded within interpersonal, institutional, environmental, and sociocultural contexts.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings indicate opportunities for healthy sleep are influenced by social, institutional, and environmental conditions in addition to individual practices. Consequently, sleep-health strategies targeting young adults may benefit from integrating individual education with interventions that address peer and family practices, institutional expectations, and environments conducive to sleep health. Further longitudinal and mixed-method research is required to investigate the pathways identified in these qualitative accounts.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>The findings were discussed with patient and public involvement (PPI) members who are young adults. Their insights informed the development of the interview guide. A subset of participants helped interpret the results by engaging in memb","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70933","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197896","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":"Co-Producing the Design Brief for an Intervention to Increase Breast Cancer Awareness Among Black Women in Ante-Natal Settings: A Qualitative Study With Breast Cancer Survivors, Community Members, and Midwives in the UK","authors":"Afrodita Marcu, Lorraine Marke, Emma Ream, Jo Armes","doi":"10.1111/hex.70936","DOIUrl":"10.1111/hex.70936","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Women of Black African/Caribbean heritage in the UK are more likely to develop breast cancer at an early age (before being eligible for breast screening from 50 years of age), be diagnosed with advanced breast cancer, and have lower survival than White British women. Culturally acceptable interventions are needed to encourage timely symptomatic presentation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>Using the Behaviour Change Wheel (BCW) stages of intervention development, we developed the design brief for an intervention to be delivered in ante-natal settings to Black women not yet eligible for breast cancer screening.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design/Methods</h3>\u0000 \u0000 <p>Four co-production sessions with 14 women: 4 with a history of breast cancer, 5, without, and 5 healthcare professionals (4 midwives and 1 public health apprentice). One Patient and Public Involvement (PPI) representative of Black African & White heritage helped facilitate the sessions. The data were analysed deductively using Template Analysis and the themes were mapped onto the BCW stages and steps of intervention development.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results and Discussion</h3>\u0000 \u0000 <p>The participants agreed that the key behaviour to address is timely help-seeking for breast changes indicative of breast cancer. It was agreed the intervention should have three main functions: education, that is, increase Black women's knowledge of breast cancer symptoms (<i>psychological capability</i>), training, that is, teach breast self-checks (<i>physical capability</i>), and persuasion, that is, convince that a breast cancer diagnosis is not a death sentence and increase intentions to seek timely help (<i>reflective motivation</i>).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Delivering breast cancer education in ante-natal settings was seen as acceptable and feasible by the co-production participants. Further feasibility and acceptability testing is needed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>A female breast cancer survivor of mixed Black African and White heritage was involved as PPI representative during the project. She advised on the draft funding application, the ethics documents, and the planning of each co-production session. She helped recruit participants, facilitated the co-production sessio","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70936","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197956","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":"Qualitative Exploration of Need for Adolescent Sexual and Reproductive Health Care and Service Pathways Readiness During Pandemic in Nepal","authors":"Saki Thapa, Bikram Bucha, Swastika Shrestha, Raghu Dhital, Kritika Dixit, Lal Rawal, Amit Timilsina","doi":"10.1111/hex.70931","DOIUrl":"10.1111/hex.70931","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>COVID-19 pandemic disrupted adolescents' access to sexual and reproductive health (SRH) services for adolescents in Nepal. This study explored adolescents' and health care provider's perspectives on how the COVID-19 pandemic affected adolescents' SRH information and services, SRH-related behaviours, and factors that strengthen care and service pathways during the pandemic in Nepal.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study used qualitative methods and adapted the social cognitive theory as an analytical framework to explore individual, social and environmental influences on adolescents' sexual and reproductive health (SRH) information and services pathways during the COVID-19 pandemic. A total of 86 participants were included in the study, including 64 adolescents (15–19 years) and 22 service providers. For this, total of six focus group discussions, 12 in-depth interviews and 22 key informant interviews were conducted. Thematic analysis was conducted to identify, analyse and interpret the data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Result</h3>\u0000 \u0000 <p>The study findings showed that COVID-19 disrupted adolescents' SRH information and services pathways through interconnected environmental, social and individual factors. School closures reduced access to school-based SRH information and opportunities to interact with teachers and peers, while interruptions in service delivery compromised adolescent's pathways to SRH information and services. Adolescents reported changes in sexual behaviours and mental health effects during pandemic. Strengthening adolescents' pathways to SRH information and service during crises requires provider's capacity strengthening, conducting virtual child club programmes for self-help and social interaction, digital information and psychosocial services, and prioritising coordinated interventions among stakeholders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Maintaining adolescent SRH care during public health emergencies requires an ecosystem approach addressing individual, social and environmental factors together. Adolescents' SRH needs during public health emergencies extend beyond the availability of clinical services and include opportunities for emotional, social and trusted support. Strengthening adolescents' self-efficacy, conducive social environments, and community-based actors such as Female Community Health Volunteers (FCHVs) along with accessible, confidential and adolescent-responsive services, helps maintain continuity of sexual and reproductive health and rights","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70931","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197961","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":"Early-Life Policies and the Prevention of Multiple Long-Term Conditions: Findings From a Stakeholder Workshop Developed Collaboratively With Public Contributors","authors":"Sebastian Stannard, Nida Ziauddeen, Robin Poole, I. Cook, Emilia Holland, Erin Panes, Reet Nagra, Jack Welch, Simon DS Fraser, Nireen A Alwan","doi":"10.1111/hex.70928","DOIUrl":"10.1111/hex.70928","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The multidisciplinary ecosystem to study life course determinants and prevention of early-onset burdensome multimorbidity (MELD-B) project examined early-life factors that contribute to the risk of developing multiple long-term conditions (MLTC) in adulthood. Insights from an initial stakeholder workshop shaped the project's direction and priorities. To continue this collaborative approach, we developed a second workshop with public contributors to reflect on how our research aligns with current early-life policies. We defined these as policies that support children and their families at an early stage to mitigate risk factors and strengthen protective factors for health and wellbeing across the life course, thereby reducing the risk of MLTC later in life. The workshop explored challenges facing children and young people within the system, considered practical applications of the research findings and identified priorities for future research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The research team worked with three public contributors (one adult member of the MELD-B Advisory Group and two young researchers) to develop the workshop in terms of its questions, structure and format. Stakeholders were divided into three mixed-background groups, each facilitated by two team members, and discussions centred on predefined questions. Padlet (an online whiteboard) was used to collate ideas. Themes from the breakout rooms and full group discussions were initially identified with the aid of AI (Institutional account of Microsoft Copilot).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Fifteen stakeholders from backgrounds including health visiting (<i>n</i> = 2), charities (<i>n</i> = 1), academics (<i>n</i> = 3), healthcare practitioners (<i>n</i> = 5) and council employees (<i>n</i> = 4), attended the workshop. Stakeholders emphasised that wider systems and environments shape child and family outcomes, with poverty and socioeconomic inequality acting as major upstream drivers. Stakeholders noted that gaps in data, fragmented information systems and poor linkage hinder informed decision-making, while short-term political and budget cycles, workforce pressures, insufficient funding and implementation challenges reduce the impact of early-years policies. Stakeholders agreed that the early years are the most critical period for effective action and require coordinated, cross-sector, whole-system approaches. Stakeholders highlighted the need for research to be translated into clear, actionable guidance, and stressed the importance of participatory engagement, clear communication and relational ways of working.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70928","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197901","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":"Unpacking the Impact and Experience of Working With Lived Experience Partners in Mental Health Research—Exploring Research Team and Public Partner Perspectives","authors":"Joanna Fox, Roya Kamvar, Vanessa Pinfold, Annabel Walsh, Polly-Anna Ashford, Rosie Lindsay, Jesus Perez, Peter B. Jones, Debra Russo","doi":"10.1111/hex.70925","DOIUrl":"10.1111/hex.70925","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Patient and Public Involvement (PPI) in mental health research is encouraged by funders in the United Kingdom, supported by guidance and best practice standards. This includes a commitment to learning and understanding impact. This paper explores the experiences of individuals who worked together for 7 years within an intervention study to understand differing perspectives and conceptualisations of how PPI shaped the research study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using an instrumental case study design, qualitative data were collected in three workshops: university-based study team (<i>n</i> = 4), Lived Experience Advisory Panel (LEAP) (<i>n</i> = 5), and mixed composition (<i>n</i> = 8). Two workshops explored study set up and intervention development, the other explored a qualitative process evaluation study within the randomised controlled trial.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We recognised impact as tangible and practical, both facilitated and hindered through relational connections which contribute to ways of working that frame research. Data evidenced that both LEAP and study team members experienced a journey of learning and development in doing PPI that included friction and ‘choppy waters’. The study team valued lived experience partners and the knowledge and expertise they brought from the outset. However, issues such as low confidence in doing PPI among study team, changes in PPI team structure, COVID-19 pandemic moving work online and challenging some LEAP members over the relevance of their own lived experiences to the study, meant the journey was at times difficult.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Impact is about much more than quantifiable economic value. It is nuanced and benefits from multi-perspective explorations that move beyond surface-level practical observations to achieve deeper understanding of how lived experience expertise shapes complex research processes, across extended time periods, including the role of team dynamics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>PPI in research requires flexibility and open-mindedness to create a positive inclusive team culture and benefits from regular reflective learning with open feedback, so that timely tangible changes can be agreed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contributions</h3>\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70925","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197920","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":"A Co-Developed Evaluation Framework for a Patient Engagement Programme Within a National Dementia Research Network","authors":"Mastoora Rizai,&nbsp;Linda Grossman,&nbsp;Inbal Itzhak,&nbsp;Rosette Loughlin,&nbsp;Karen Myers Barnett,&nbsp;Ellen Snowball,&nbsp;Juanita-Dawne Bacsu,&nbsp;Kelly Beaton,&nbsp;Emma Lanza,&nbsp;Jennifer Bethell","doi":"10.1111/hex.70899","DOIUrl":"10.1111/hex.70899","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>While there is growing consensus on the importance of engaging people with lived experience in research, there is little agreement on how best to evaluate these initiatives. Co-designed frameworks tailored to specific contexts have been recommended. Our objective was to co-develop an evaluation framework to assess the implementation and impact of the Canadian Consortium on Neurodegeneration in Aging (CCNA)'s Engagement of People with Lived Experience of Dementia (EPLED) programme.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We followed a four-step process: (1) determine objectives for engagement; (2) co-develop a theory of change; (3) identify quantitative and qualitative methods to collect information and develop an evaluation plan; and (4) establish a feedback loop. The framework was co-produced with four members of the EPLED Advisory Group: a person living with dementia and three caregivers/care partners.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The programme logic model, a visual roadmap, was a foundational step, articulating programme activities and their linkages to intended outcomes. The framework was guided by four evaluation questions, each aligned with indicators, methods and information sources. Our data collection approach includes data collection from Advisory Group members and researchers, using questionnaires and an arts-based evaluation design tailored to promote inclusivity and engagement. Data will be collated and disseminated through various mediums and responses from the arts-based activity will be compiled into a collective digital mural.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our report contributes to the existing literature by providing an innovative example of a co-developed evaluation framework in the context of a national research network. The insights could inform future efforts in evaluating initiatives intended to meaningfully engage patient partners in research, particularly people with lived experience of dementia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>People with lived experience took part in all aspects of this work. They contributed to the development of the funding proposal and were listed as co-investigators on the grant. They were involved in the development of the evaluation framework described herein and have co-authored the current manuscript.</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.70899","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197801","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":"‘That Essence of Empowerment’: An Exploration of People Living With Mental Illness', Healthcare Professionals', and Researchers' Experiences of Co-Design","authors":"Catherine O'Donnell,&nbsp;Oliver Ardill-Young,&nbsp;Jacqueline Huber,&nbsp;Aaron Schokman,&nbsp;Philip B. Ward,&nbsp;Jackie Curtis,&nbsp;Alyssa Milton,&nbsp;Scott Teasdale","doi":"10.1111/hex.70888","DOIUrl":"10.1111/hex.70888","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Aims&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Co-design is commonly adopted as a methodology within mental health research. However, little is known about the experiences of people involved in co-design. We aimed to describe how a recent co-design process was enacted, exploring experiences of this and how power was manifested through this process.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Two workshops, seven focus groups, and a structured power reflection were conducted as part of an iterative co-design process involving people living with mental illness experiencing food insecurity (&lt;i&gt;n&lt;/i&gt; = 9), mental healthcare professionals, including peer workers (&lt;i&gt;n&lt;/i&gt; = 11), and researchers (&lt;i&gt;n&lt;/i&gt; = 4). These took place in Sydney, Australia, between March 2023 and February 2024. Experiences of co-design were explored using a mixed-methods survey following workshops and qualitative enquiry during focus groups.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Three analytic categories were constructed, relating to ‘doing’ co-design, the experience of co-design and the impacts of co-design, comprising 12 interpretative themes. The development of strong relationships, through the diversity of collaboration and open communication, was perceived as contributing to the impact of overall positive experiences and personal growth. Challenges centred around managing expectations of the uncertain process and perceptions regarding power imbalances. Co-design was also seen as having flow-on effects on clinical culture and snowballing action within the health service.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We identified mechanisms of how co-design processes relate to experiences and impacts. Inequalities in power dynamics are inescapable but can be successfully navigated by building a sense of partnership and collaboration. Crucially, our findings emphasised the intrinsic value of including people with Lived/Living Experience of mental illness in research which directly impacts them.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Lived Experience or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Two co-authors with Lived/Living Experience contributed directly to this article, one of whom is the first co-author and co-led the research from initial conceptualisation and funding acquisition. Findings were shared with all participants, as well as with a wider group of Lived/Living Experience representatives and healthcare professionals, who informed interpretation and dissemination.&lt;/p&gt;\u0000 &lt;","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.70888","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197887","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}