Health Expectations最新文献

{"title":"Assessment of Hope in Pediatric Oncology: Development, Content and Face Validation of a Parental Questionnaire","authors":"Laurine Milville,&nbsp;Pascal Antoine,&nbsp;Sophie Lelorain","doi":"10.1111/hex.70388","DOIUrl":"https://doi.org/10.1111/hex.70388","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>We outline the steps in creating and evaluating the content and face validity of the Questionnaire on Parental Hope in Pediatric Oncology (Q-PHPO), which measures the understanding of information provided by healthcare professionals (Part 1) and hope as experienced and perceived by parents (Part 2).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The development of the Q-PHPO was based on a literature review and 14 interviews with parents whose children had been diagnosed with cancer. The content and face validity were verified both quantitatively and qualitatively by assessing the clarity, relevance, and discomfort caused by the questionnaire, with input from expert parents (<i>n</i> = 7) and professionals (<i>n</i> = 10).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In terms of clarity, most items had an item content validity index (I-CVI) ≥ 0.80 and a kappa (<i>K</i>) value ≥ 0.74. Despite more nuanced results being obtained for relevance, most items had an I-CVI ≥ 0.70 and a <i>K</i> value ≥ 0.74. After revision, the first part of the Q-PHPO includes two dimensions: the child's illness (5 items) and the child's psychosocial well-being (4 items). The second part contains 20 items divided into three dimensions: the child's illness (6 items), the child's psychosocial well-being (9 items), and the parent's psychosocial well-being (5 items).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results provide evidence of the content and face validity of the Q-PHPO. Further testing will confirm the questionnaire's construct and criterion validity and its reliability, making it a potentially valuable tool in pediatric oncology departments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>In this study, we adopted a Patient and Public Involvement and Engagement approach, actively involving patients, healthcare professionals, and researchers as key contributors to the development and evaluation of the Q-PHPO questionnaire. Parents of children in remission from leukemia and healthcare professionals provided valuable insights based on their lived experiences, influencing the content of the questionnaire, and contributed by assessing the relevance and clarity of the questionnaire items. Researchers specializing in questionnaire development and oncology reviewed and refined the instrument, ensuring its validity and suitability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70388","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144869750","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 a Minority Group's (Roma) Experiences of Access and Quality in Maternity Services","authors":"Jaspreet Kaur Dullat,&nbsp;Thérèse McDonnell,&nbsp;Louise Hendrick,&nbsp;Léan McMahon,&nbsp;Gemma Moore,&nbsp;Emily Murphy,&nbsp;Carmen Nae,&nbsp;Danut Nae,&nbsp;Marianna Prontera,&nbsp;Eilish McAuliffe","doi":"10.1111/hex.70389","DOIUrl":"https://doi.org/10.1111/hex.70389","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Maternal health is a fundamental human right, ensuring that all women have access to non-discriminatory, equitable and high-quality maternal and reproductive healthcare. Minority groups and migrant populations face significant challenges in accessing maternity services. The Roma are Europe's largest and most marginalised ethnic group. Ireland has a sizable population of Roma migrants, and there is limited information on their experiences of maternal care in Ireland. Their participation in research and user panels is challenging as many lack proficiency in English and tend to have low levels of health literacy. By engaging Roma women in a unique co-design education and research process, this study aims to identify barriers to accessing care faced by this minority community and understand their experiences of maternity services to enhance equity, accessibility and cultural responsiveness in maternal healthcare.&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;This study employed a co-design approach in partnership with Cairde, a community health organisation, to engage Roma women in exploring their experiences while engaging with maternity services. Eight Roma women participated in four online workshops and completed a questionnaire to share their experiences of pregnancy, childbirth and postnatal care. Workshops incorporated information components, focus groups and Romani translation and interpretation to ensure accessibility. Ethical considerations were maintained, and inductive thematic analysis was conducted using NVivo 20.&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;The study involved eight Roma women aged 21–39, many of whom had their first pregnancy between the ages of 14 and 19 and experienced homelessness after the birth of their first child in Ireland. Proficiency in English was limited; five women reported needing a translator while engaging with maternity services. Key patterns identified in Roma women's experiences of maternity care included language barriers, inadequate translation and interpretation support, and systemic discrimination, which leads to delays in antenatal care and heightened emotional distress. Additionally, systemic discrimination manifested through negative interactions with hospital security and administrative staff fostered mistrust and disengagement from healthcare services. However, despite these barriers, many Roma women expressed a preference for Irish maternity care over Romanian services, citing respectful treatment from healthcare professionals, shorter hospital stays, and the provision of essential postnatal supplies.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70389","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144869219","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":"Nurturing Acceptance for Research in the Community: Conceptualising Engagement Towards Research Through Normalisation Process Theory","authors":"Tanvir C. Turin,&nbsp;Nashit Chowdhury,&nbsp;Tanmoy Newaz,&nbsp;Mohammad M. H. Raihan,&nbsp;Nafiza Rahman,&nbsp;Nahid Rumana","doi":"10.1111/hex.70356","DOIUrl":"https://doi.org/10.1111/hex.70356","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Community-engaged research with immigrant and visible minority communities requires intentional strategies to foster acceptance, trust and sustained participation. Historically, research in marginalised communities has been extractive and externally driven, leading to mistrust and scepticism.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objectives&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To address this, we applied Normalisation Process Theory (NPT) as a guiding framework to integrate research as a meaningful, community-driven practice rather than an extractive academic exercise. The objective of this paper is to describe how NPT can illuminate the social and relational processes involved in introducing, legitimising and maintaining collaborative research practices within a community.&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;Using NPT's four constructs—Coherence (establishing the ‘why’), Cognitive Participation (generating the ‘will’), Collective Action (carrying out the ‘tasks’) and Reflexive Monitoring (reflecting and adapting)—we structured a phased approach to community engagement. Our initiatives included community-focused outreach, community organisation for capacity-building and collaborative research activities, all designed to shift research from being externally imposed to community-engaged. A key challenge was achieving initial acceptance of research within the community.&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;Through intentional outreach, inclusive recruitment and participatory knowledge production, we transitioned from establishing legitimacy to building long-term, community-driven partnerships.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Our experience highlight the importance of embedding research within everyday community life, valuing local expertise and ensuring that knowledge production remains collaborative, accessible and action-oriented. This approach not only bridges the gap between academia and the community but also fosters equitable, enduring research relationships that lead to meaningful, sustainable impact.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;While preparing this manuscript, we have partnered actively with community scholars and citizen researchers from the very beginning. We had regular interactions with them to get their valuable and insightful inputs in shaping our reflections","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70356","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144861847","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":"The Heart Health Yarning Tool: Co-Designing a Shared Decision-Making Tool With Aboriginal and Torres Strait Islander People for Cardiovascular Disease Prevention and Risk Management","authors":"Shannon McKinn,&nbsp;Judith Parnham,&nbsp;David Follent,&nbsp;Marguerite Tracy,&nbsp;Rosemary Wyber,&nbsp;Natasha Freeman,&nbsp;Rajesh Puranik,&nbsp;Michelle Dickson,&nbsp;Carissa Bonner","doi":"10.1111/hex.70387","DOIUrl":"https://doi.org/10.1111/hex.70387","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Due to the ongoing impact of colonisation, Aboriginal and Torres Strait Islander people live with a greater burden of cardiovascular disease (CVD) than non-Indigenous Australians. Shared decision-making (SDM) is recognised as an essential component of person-centred care. However, there has been a lack of tools to support clinician communication and SDM to address CVD prevention in this important ‘at-risk’ population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We developed the Heart Health Yarning Tool, an online SDM resource co-designed with Aboriginal and Torres Strait Islander people, to be implemented alongside the new Australian guidelines for primary CVD risk assessment and management. This was a three-phase project, consisting of a stakeholder consultation and co-design (Phase 1), concept mapping of qualitative data to an existing SDM model (Phase 2), and content development and testing (Phase 3).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Phase 1 consisted of a stakeholder consultation and co-design process, including consumer yarning workshops (<i>n</i> = 21), individual yarning sessions with Aboriginal and Torres Strait Islander Health Workers/Practitioners (<i>n</i> = 8), consumers (<i>n</i> = 17), and interviews with general practitioners (<i>n</i> = 5). Phase 2 involved a mapping process, where qualitative interview data was integrated into the conceptual framework of an existing culturally adapted SDM model, ‘Finding Your Way,’ to tailor the model to the CVD context. Phase 3 involved developing and testing content for the new tool, based on findings from Phases 1 and 2, using evidence-based SDM formats such as question prompt lists, action planning tools and decision aids to support communication and understanding of CVD risk. This phase included user testing with consumers and health professionals (<i>n</i> = 10), as well as presentation of the tool to key advisory groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The Heart Health Yarning Tool supports health professionals in making shared decisions about heart health with Aboriginal and Torres Strait Islander people. It can be used as a conversation guide in primary care consultations or as a training tool for health professionals. Future research will assess whether the use of the Heart Health Yarning Tool improves health professionals' cultural and SDM competencies as well as cardiovascular outcomes in Aboriginal and Torres Strait Islander people.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70387","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144861611","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":"Advance Care Planning in German General Practice: A Longitudinal Qualitative Study on Patients' Expectations and Experiences","authors":"Alexandra Schmidt,&nbsp;Klaus Weckbecker,&nbsp;Jürgen in der Schmitten,&nbsp;Kornelia Götze,&nbsp;Achim Mortsiefer","doi":"10.1111/hex.70392","DOIUrl":"https://doi.org/10.1111/hex.70392","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Advance care planning (ACP) empowers individuals to make informed decisions about future medical care. While research has focused on patients with advanced chronic or terminal conditions, there remains a notable gap in understanding the perspectives and experiences of ambulatory individuals who proactively engage in ACP.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To explore ambulatory patients' perspectives on and experiences with facilitated ACP provided by trained professionals in German general practices, focusing on the expectations, motivations and outcomes of the ACP process.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Longitudinal qualitative design using semi-structured telephone interviews, conducted before, immediately after and 12 months after ACP facilitation. Interviews were analysed using thematic qualitative text analysis by Kuckartz.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Interviews were conducted with eight German patients (six females and two males; mean age: 63.6 years; frailty score from 1 to 5) in two general practice settings.&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;Participants valued comprehensive advance directives (ADs) and structured ACP conversations in general practice. Key motivators for seeking ACP facilitation were maintaining autonomy and reducing family burden. Trustworthy discussions with professional facilitators, structured guidance and clear communication, particularly involving healthcare proxies, were essential for a satisfying ACP process. Despite expressing a prior interest in discussing care preferences, some participants had not yet initiated these conversations.&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;ACP facilitation enables patients to articulate their values and healthcare preferences, supporting decision-making and reducing uncertainty. Integrating structured ACP discussions into routine primary care could enhance patient autonomy and preparedness. Future research should explore strategies to optimise ACP implementation and assess its long-term impact on patient outcomes.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Stakeholder and patient involvement is a crucial aspect of empowering researc","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70392","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144861863","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":"Experience, Process, and Impact of Involving Informal Caregivers of People With Dementia as Public Contributors to Inform the Development of a Complex Intervention: A Mixed-Methods Study","authors":"Frida Svedin,&nbsp;Ida Österman Menander,&nbsp;Oscar Blomberg,&nbsp;Anders Brantnell,&nbsp;Paul Farrand,&nbsp;Theresia Lückner,&nbsp;Kristina Sundelin,&nbsp;Joan Turney,&nbsp;Anna Cristina Åberg,&nbsp;Joanne Woodford","doi":"10.1111/hex.70382","DOIUrl":"https://doi.org/10.1111/hex.70382","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Introduction&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Public contribution is increasingly prioritised by research institutions, funding bodies, and policymakers globally. However, the evidence base for the impact of public contribution remains limited. Researchers and public contributors' experiences of such activities are also rarely reported. We worked alongside a Public Advisory Group (PAG) consisting of informal caregivers of people with dementia during a series of studies to inform the development and adaptation of a guided low-intensity behavioural activation intervention for people with dementia (INVOLVERA). The overall aim of the current study was to explore the experience, process, and impact of involving caregivers of people with dementia as public contributors during the intervention development phase of INVOLVERA.&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;Public contribution activities were recorded using impact logs from PAG meetings, from which public contributors' suggestions for the intervention were extracted and categorised, and the implementation rate calculated. Semi-structured interviews were conducted with public contributors (&lt;i&gt;n&lt;/i&gt; = 4) and researchers (&lt;i&gt;n&lt;/i&gt; = 3), and analysed using manifest content analysis.&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;Public contributors made 158 suggestions across nine PAG meetings, with 76% of these implemented by the researchers. Analysis of interviews generated three categories: &lt;i&gt;Perceived impacts, Interactions and facilitators&lt;/i&gt;, and &lt;i&gt;Future challenges and opportunities&lt;/i&gt;. Interviews suggested public contribution activities positively impacted the research (e.g., improving intervention acceptability) and those involved (e.g., new knowledge and skills). Public contributors provided valuable recommendations for involving people with dementia and male caregivers in future activities.&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;Findings illustrate a positive impact of public contribution activities on the research and those involved. This underscores the important role of public contribution during the development of complex interventions and further emphasises the need for comprehensive reporting on the impact of such activities. We believe this study strengthens the evidence base for public contribution and offers practical insights into fostering effective partnerships with public contributors.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A PAG consisting of w","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70382","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144861610","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":"Gaps in the Engagement of People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Health Research: A Qualitative Study of Untapped Potential","authors":"Lisa D. Hawke,&nbsp;Jingyi Hou,&nbsp;Charlotte Munro,&nbsp;Claudia Sendanyoye,&nbsp;Shoshana Hauer,&nbsp;Mary Rose van Kesteren,&nbsp;Katie Upham,&nbsp;Tanya Halsall,&nbsp;Yona Lunsky","doi":"10.1111/hex.70393","DOIUrl":"https://doi.org/10.1111/hex.70393","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;People with lived/living experience and family/caregivers (PLLEX-C) can be engaged in mental health and substance use health research in roles such as advisors, collaborators, and co-researchers. While there is a substantial body of research describing the barriers and facilitators to effective lived experience engagement, the actual contributions that PLLEX-C are making to the research remains under-explored. This qualitative descriptive study aimed to explore new areas where PLLEX-C can contribute to the research process. We wanted to understand gaps in the contributions of PLLEX-C and how we can provide opportunities to grow and enhance their contributions to the research in which they are engaged.&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;A Canada-wide sample of 28 PLLEX-C took part in one of five focus groups, while 12 researchers from across Canada took part in individual interviews using a co-designed semi-structured interview guide. Discussions were recorded, transcribed, and analyzed using codebook thematic analysis. We engaged PLLEX-C throughout the course of the study.&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;Gaps in the engagement of PLLEX-C were found across the research lifecycle. This included key aspects of project initiation, like establishing research questions and priorities, contributing to grant applications, and contributing to ethics processes. Gaps were also encountered in the research operations process, in terms of recruitment processes and data analysis. Lastly, gaps at the end-of-grant knowledge translation stage included manuscript co-authorship and co-presentation at conferences or other events.&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;PLLEX-C are willing to be engaged in research across the research lifecycle, but many have experienced areas of untapped potential. To develop appropriate engagement plans for a given project, it is important to have open discussions with the PLLEX-C engaged to understand their areas of skill, interest, and professional development goals, as well as barriers to full engagement in some stages of the project. This will make it possible to co-design a creative and flexible personalized engagement plan that is meaningful to them and maximizes their engagement potential. This process will ensure that authentic engagement overrides tokenistic practices.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient Engagement&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study was conducted on","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70393","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144833309","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":"The CIRCLE Care Home Guide: A Co-Designed Resource on LGBTQ+ Inclusion for Care Homes","authors":"Jolie R. Keemink,&nbsp;John Hammond,&nbsp;Grace Collins,&nbsp;Joseph Price,&nbsp;Martin Wells,&nbsp;Sallie Johnson,&nbsp;Susan A. Rugg,&nbsp;Martin Parish,&nbsp;Andrew King,&nbsp;Kathryn Almack","doi":"10.1111/hex.70309","DOIUrl":"https://doi.org/10.1111/hex.70309","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Many older LGBTQ+ people still face discrimination in care home settings, and many care home staff do not have the knowledge required to provide LGBTQ+ inclusive care. Despite the availability of valuable resources on LGBTQ+ inclusion, its widespread use in social care practice in the United Kingdom is lacking. To address this issue, the current study presents a novel resource on LGBTQ+ inclusion co-designed by older LGBTQ+ people, care home staff and researchers, developed to be usable in a care home context.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Five older LGBTQ+ people, four care home staff and three researchers co-designed the novel resource in four online co-design meetings using an adapted experience-based co-design process. Co-design meetings were recorded to collect data on the co-design process. We organised an online focus group to collect data on how the co-design members had experienced the co-design process and their thoughts on the anticipated impact of the novel resource.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The co-design group successfully developed a resource that adds to existing resources by being fully co-designed by older LGBTQ+ people, care home staff and researchers. It prioritises positive actions care staff can take along someone's care journey, available in formats designed to work well in a care home environment. Further, the focus group data highlighted the power of lived experience, from perspectives of both older LGBTQ+ people and care staff. Both perspectives brought unique elements to the co-design sessions and are represented in the final resource.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Through an inclusive co-design process, we developed a new resource for care homes to support LGBTQ+ inclusive practice. Our findings demonstrate the importance of collaboration between older LGBTQ+ people and care home staff to develop resources for inclusive practice. The final version of the resource has been launched and future research will assess its impact in practice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Involvement</h3>\u0000 \u0000 <p>The resource was fully co-designed by older LGBTQ+ people and care home staff. The wider project was supported by an older LGBTQ+ person as co-applicant.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70309","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144832491","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":"Barriers and Facilitators to Accessing Healthcare for People With Parkinson's Disease in Latin America: A Qualitative Study","authors":"Christine Jeyachandran,&nbsp;Catherine Spooner,&nbsp;Ana Margarita Rodriguez Salgado,&nbsp;Matthew Prina,&nbsp;Joel Rhee,&nbsp;Jorge Jesus Llibre-Guerra,&nbsp;Dani Kim,&nbsp;Juan J. Llibre-Rodriguez,&nbsp;Mark F. Harris","doi":"10.1111/hex.70380","DOIUrl":"https://doi.org/10.1111/hex.70380","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>The aim of the study was to identify the barriers and facilitators to healthcare access for people with Parkinson's disease (PWP) in Spanish-speaking Latin American countries (LAC) in Central and South America, to understand their drivers and consider the implications for health systems in LAC.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Four online semi-structured focus groups were conducted with 25 PWP who provide education and/or support to PWP. The study was designed and implemented by a person with lived experience of PD. Data were mapped to an existing model of access to healthcare that incorporates provider and consumer abilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>There were multiple provider barriers in terms of availability, affordability and appropriateness of care, driven by a lack of health system capacity. Doctors didn't recognise Parkinson's symptoms, which resulted in delayed diagnosis. Limited knowledge of Parkinson's and limited multidisciplinary care and medication was common across Spanish-speaking Latin America. Inequities in access were experienced by those living in rural areas and those who could not afford private care. Barriers at the person level included stigma, depression and lack of health literacy around PD. Family and peer support were facilitators of access.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Significant gaps in Parkinson's care across Latin America are driven by stigma and limited service availability. This study highlights the need for culturally tailored interventions that address stigma, promote peer support and strengthen self-management and health professional training across Spanish-speaking Latin America. We call for more global partnerships to encourage training and mentoring in regional cities across Latin America with co-designed approaches to ensure a culturally appropriate framework of care that supports patients and healthcare professionals with a focus on self-management.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The first author (C.J.) has Parkinson's disease (PD) and lived with the condition for 8 years in Peru. She was involved in all aspects of the study, including design, data collection, analysis and writing this article. C.J. is an international advocate in the PD community.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70380","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144832405","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-Design or Faux-Design? Reflections on Co-Designing Safe Spaces for People in Emotional Distress or Suicidal Crisis in Australia","authors":"Erin Oldman,&nbsp;Michelle Banfield,&nbsp;Heather Lamb,&nbsp;Erin Stewart,&nbsp;Helen Tosin Oni,&nbsp;Benn Miller,&nbsp;Mel Giugni,&nbsp;Alyssa R. Morse,&nbsp;Scott J. Fitzpatrick","doi":"10.1111/hex.70379","DOIUrl":"https://doi.org/10.1111/hex.70379","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The past decade has seen an increase in non-clinical ‘safe spaces’ for those experiencing suicidal crisis or distress. Integrating service user perspectives through co-design is increasingly recognised as essential for the design of these services to meet user needs. Operationalising genuine co-design practices involving diverse stakeholders in local contexts remains underdeveloped, and research remains limited.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Drawing on co-design participants' experiences, this study evaluates how co-design processes influenced the design and implementation of safe space models in Australia.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A mixed-methods design was used to analyse survey, interview and documentary data for six safe space co-design projects. Thematic synthesis and triangulation were applied to develop overarching themes.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Key partners, steering committee members and lived experience representatives involved in the co-design and implementation of the six sites participated in surveys and interviews.&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;Power imbalances between health services staff and lived experience representatives were key barriers to genuine engagement, alongside tokenistic co-design, or ‘faux-design’. Despite these challenges, all participants reflected positively on their involvement.&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;Effective co-design requires trust, transparency, power sharing, sufficient resourcing and sustained lived experience engagement throughout the project life cycle. Health service providers must assess their capacity for authentic engagement before attempting co-design. Future co-design initiatives should focus on ensuring that lived experience input is not lost during implementation. Future research should explore how to support and sustain this engagement throughout all project phases.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;People with lived experience of emotional distress and/or suicidal crisis, including academic researchers, health, community service and peer workers, carers, and advocates were involved in this study. All a","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70379","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144814705","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}