Health Expectations最新文献

{"title":"Advancing the Care Experience for Patients Receiving Palliative Care as They Transition From Hospital to Home (ACEPATH): Phase 2 of Codesigning an Intervention to Improve Hospital-to-Home Transitions for Patients and Family Caregivers","authors":"Madeline McCoy, Taylor Shorting, Vinay Kumar Mysore, Edward Fitzgibbon, Jill Rice, Meghan Savigny, Natalie C. Ernecoff, Marianne Weiss, Shirley H. Bush, Daniel Vincent, Meaghen Hagarty, Geneviève Lalumière, Rex Pattison, Mona Kornberg, Maya Stern, Kerry Kuluski, Colleen Webber, Adrianna Bruni, Tara Connolly, Sarina R. Isenberg","doi":"10.1111/hex.70331","DOIUrl":"https://doi.org/10.1111/hex.70331","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Although many people nearing the end of life wish to die at home, many patients experience re-hospitalisation and hospital death. No end-of-life hospital-to-home interventions have been developed with patients and caregivers, and none have been tested in Canada. Through an iterative, participatory design approach, we codesigned an intervention in partnership with potential users of the final intervention: patients, family caregivers (FCs) and healthcare providers (HCPs).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>This study (ACEPATH) aimed to use a patient, FC and HCP engaged codesign process to continue to iterate and refine an intervention for transition from hospital to home in preparation for a pilot implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The codesign process consisted of: (1) Development of codesign workshop (CDW) materials; (2) CDWs with patients and/or their FCs, who iterated our team's previously developed checklists and reference materials; (3) Low-fidelity prototyping sessions with hospital and community HCPs, who provided feedback on the low-fidelity prototype, the guidebook (that combined the refined checklists and guides) and identified HCPs to facilitate the guidebook; and (4) High-fidelity prototyping sessions entailed simulated interactions between an HCP and a patient/FC using the intervention, accompanied by discussion for feedback.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants identified several areas for refinement to enhance the relevance, clarity and acceptability of the guidebook intervention. Patients and FCs refined and organised questions into specific ‘moments’ that would be helpful for conversations with HCPs during their transition home. HCPs identified social workers, hospital home care coordinators and community home care coordinators as the best fit for facilitating completion of the guidebook at three moments (preparing to leave the hospital, immediately before discharge and getting comfortable at home).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We successfully codesigned a guidebook for hospital-to-home transitions that was amenable to patients, FCs and HCPs. The next steps will entail piloting the guidebook to evaluate its acceptability, appropriateness, feasibility, costs and fidelity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70331","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144606565","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":"Seeing the Invisible Resiliency (STIR): Chronic Autoimmune Conditions and Post-Secondary Education Experiences in Young Adulthood","authors":"Samantha A. Morin, Angelina Horta, Katelyn Greer, Parveen Priya Rai, Haley Gross, Raegan Reiter, Ingrid Nielssen, Marcia Bruce, Kim Giroux, Deborah A. Marshall","doi":"10.1111/hex.70332","DOIUrl":"https://doi.org/10.1111/hex.70332","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Young adults with chronic autoimmune conditions face unique and often overlooked challenges in post-secondary education due to the invisible and unpredictable nature of these conditions. This patient-led qualitative study aims to further understand the experiences of young adults living with chronic autoimmune conditions while attending or considering attending post-secondary education.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study followed the three-phase Patient and Community Engagement Research (PaCER) approach, a participatory framework that trains individuals with lived experience to lead all stages of research. In the first stage (SET), the protocol was co-designed with three external patient-partners. Study participants included young adults (18–35 years) with a chronic autoimmune condition for > 1 year who considered attending or attended a Canadian post-secondary school within the last 5 years and were recruited through social media. Data were collected (COLLECT) via focus group and interviews and then analysed using thematic and narrative analysis. Findings were shared back with study participants (REFLECT) for refinement and to inform recommendations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Ten young adults participated, and eight key themes were identified. Themes included the wide-ranging impacts of disease management, the value of peer and family support, protective and risk factors for success, limited awareness and education around chronic conditions, and sometimes-unconscious burden of navigating invisible conditions. Participants also reflected on their resilience and the shifting accessibility landscape during Covid-19, and offered detailed feedback on current gaps and needed support. Their recommendations underscored ongoing institutional shortcomings and the need for systemic change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our findings indicate that young adults living with chronic autoimmune conditions are not having their needs sufficiently met while navigating the post-secondary education system. It is imperative that changes and feedback provided by students with lived experience are implemented to ensure an accessible post-secondary education experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Seven PaCER researchers, who identify as young adults with lived experience of chronic conditions, led the study design, data collecti","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70332","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144606564","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":"Correction to “Understanding Barriers to Engagement With a Prostate Cancer Research and Genetic Risk Service Among UK Men of Black African or Black Caribbean Ancestry”","authors":"","doi":"10.1111/hex.70341","DOIUrl":"https://doi.org/10.1111/hex.70341","url":null,"abstract":"<p>Rose, H., Hainsworth, E., Thompson, J., Green, S., Eva, M., Denzil, J., Rosalind, E. and Bancroft, E. (2025), Understanding Barriers to Engagement With a Prostate Cancer Research and Genetic Risk Service Among UK Men of Black African or Black Caribbean Ancestry. Health Expectations, 28: e70282. https://doi.org/10.1111/hex.70282</p><p>R. Hall, E. Hainsworth, J. Thompson, S. Green, E. McGrowder, D. James, R. Eeles, E. Bancroft.\u0000\u0000 </p><p>We apologize for this error.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70341","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144589598","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":"Uncovering the Dynamic System Driving Older Adults' Vitality: A Causal Loop Diagram Co-Created With Dutch Older Adults","authors":"Djoeke Besselink,&nbsp;Fons van der Lucht,&nbsp;Lisa Barsties,&nbsp;Martine Jansen- van der Vliet,&nbsp;Thomas G. Kuijpers,&nbsp;Lidwien Lemmens,&nbsp;Evelyn J. Finnema,&nbsp;Saskia W. van den Berg","doi":"10.1111/hex.70344","DOIUrl":"https://doi.org/10.1111/hex.70344","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;Most studies on older adults' vitality focus on linear connections between determinants and outcomes. To design more comprehensive and impactful approaches to support the vitality of older adults, a better understanding of the interplay among elements that shape their vitality is necessary.&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 uncover the underlying dynamic system that drives vitality in older adults, drawing directly from older adults' perspectives.&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;During three group model-building sessions with 10–12 older adults (≥ 55 years old), a causal loop diagram with relevant feedback loops was developed through co-creation with older adults. The construction and analysis of the causal loop diagram were facilitated using the online modelling tools Vensim and Kumu. The group model-building sessions were guided by Scriptapedia, an online guide to conducting group model-building practices.&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 final CLD consisted of 15 elements contributing to older adults' vitality, organised into three themes: ‘Psychological and emotional elements’, ‘Social connections and support’ and ‘Lifestyle and habits’. A total of 41 reinforcing feedback loops were identified, with 21 involving all three themes, 15 connecting two themes and 5 within a single theme.&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;This study displays the complex interplay of elements influencing older adults' vitality, highlighting the critical roles of psychological, social and lifestyle-related elements. The participatory-led approach yielded co-produced insights that inform public health strategies, underscoring the need for comprehensive, multidisciplinary approaches to promote older adults' vitality. Such approaches must offer social opportunities and foster individuals' capacity and motivation to engage in meaningful social relationships.&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;The study was conducted in collaboration with a municipal policymaker and a coordinator of local community centres, who provided input on participant recruitment, materials, data interpretation, ethical considerations and result dissemination. During data collection, twelve older adults participated in three group model-building sessions, collaborat","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70344","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144582143","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 Proposal for Addressing Bioethical Concerns Along the 10-Step Framework for Community Engagement","authors":"Abdou Simon Senghor,&nbsp;Michelle Medeiros,&nbsp;Claudia Baquet,&nbsp;Franklin Lance,&nbsp;C. Daniel Mullins","doi":"10.1111/hex.70345","DOIUrl":"https://doi.org/10.1111/hex.70345","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Building trust by applying an ethical deliberation approach can increase Black/African American participation in clinical and translational community-engaged research (CEnR).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>We provide examples of case studies from the literature to identify ethical issues associated with each step of the 10-Step Framework. To address these ethical issues, we applied an ethical deliberation approach embodied in three moments: (1) broadening and deepening the understanding of the situation and/or research scenarios, (2) envisioning action scenarios for more trustworthy research, and (3) coming to a judgement based on the comparative evaluation of scenarios.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Examples of ethical issues identified include a lack of shared decision-making on proposed research topics, lengthy periods for data analysis and reporting that frustrate partners who want more timely results, and the lack of privacy, confidentiality and non-compliance with consent permissions for the dissemination of results.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We recommend tailoring the ethical deliberation approach to any project dealing with ethical issues and conducting empirical studies to test this approach in CEnR.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>As part of a community-engaged research (CEnR) project, this paper benefited from the contribution of F.L., a member of a community organisation, as a co-author. This author was actively involved in contributing to the review of ethical issues in community-engaged research and how the ethical deliberation approach can contribute to addressing these ethical issues.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70345","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144582144","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":"Children's Communication Choices About Musculoskeletal Pain and Injury: Insights From a Public Involvement Event","authors":"Rhiannon Joslin,&nbsp;Maggie Donovan-Hall,&nbsp;Mary Barker,&nbsp;Kathryn. A. Birnie,&nbsp;Eleanor Melfi,&nbsp;Lisa Roberts","doi":"10.1111/hex.70347","DOIUrl":"https://doi.org/10.1111/hex.70347","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;Musculoskeletal pain and injury are common in childhood. To assess and manage children's pain appropriately, it is crucial to understand their perspective on how the problem started and how it feels. There are multiple barriers to children being heard. Offering visual-based communication opportunities, in addition to traditional language-based communication, could potentially help children to retell their experiences. The aim of the public involvement event was to establish how children chose to retell their experience of musculoskeletal pain or injury.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;As part of the preliminary work for the design of a clinical intervention, children's opinions were sought at a public event. An interactive exhibit invited children to retell their musculoskeletal pain and injury experiences through talking, drawing, acting, writing, using a human figurine, or combining these methods. Observation and note-taking were used by exhibit facilitators to record how children chose to retell their experience.&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;One hundred and twelve children aged 2–17 years participated in the interactive exhibit. Most children choose to use a creative activity in addition to talking about their experience. Drawing or using a human figurine was the most frequently used creative activity. Creative methods, most often drawing, enabled some children to communicate their pain experience without talking. Age and gender differences were observed, with younger children being more likely to draw and boys using human figurines more often.&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;There was no ‘one size fits all’ approach to communication as children had different preferences. The most frequently used creative methods, drawing and the use of a human figurine, will inform the design of a tailored physiotherapy intervention developed with service users.&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;This public involvement event highlights the valuable role children can play in shaping research processes to inform the development of interventions. The broader research programme, including this event, was supported by the University Faculty of Medicine Youth Advisory Group, comprising nine members aged 14–18, who actively contributed by helping to determine the methods used, during two 1-h sessions.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70347","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144582142","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Public and Healthcare Professional Attitudes Towards Risk-Stratified Bowel Screening: A Qualitative Study Using an Info-Comic Book","authors":"Hannah Miles,&nbsp;Una Macleod,&nbsp;David Weller,&nbsp;Joanne Cairns","doi":"10.1111/hex.70315","DOIUrl":"https://doi.org/10.1111/hex.70315","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;Screening for bowel cancer (colorectal cancer, CRC) is well established in many high-income countries. There has been considerable interest in moving towards risk-based bowel screening to increase the efficiency and effectiveness of screening. This UK-based qualitative study explored public and healthcare professionals (HCPs)' attitudes towards risk-based bowel screening.&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;Five virtual focus groups were held with members of the public of bowel screening age (60–74 in England; 50–74 in Scotland) and HCPs to explore attitudes towards risk-based bowel screening. Public participants (&lt;i&gt;n&lt;/i&gt; = 12) were invited through our existing patient and public involvement (PPI) networks. HCPs (&lt;i&gt;n&lt;/i&gt; = 11) were recruited through existing networks and with the support of screening hubs.&lt;/p&gt;\u0000 \u0000 &lt;p&gt;A co-created info-comic book was used to facilitate discussion on bowel cancer risk factors. Following transcription, qualitative data were analysed thematically.&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;There was consensus that more intense screening for those of higher risk is acceptable, but this should not imply less screening for those of lower risk. There was some agreement between the public and HCPs over concerns with undue focus on risk factors, which could disadvantage those with minimal risk factors. There was also a desire to streamline existing bowel screening across the UK nations. It was felt that the current screening programme, by treating people with all risk levels in the same way, is equitable—so clear communication is needed if this is to be changed.&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;Findings indicate a preference that any changes to the bowel screening programme should enhance the current screening offer, and not compromise screening offered to individuals deemed to be low risk. Changes need to be acceptable to the public and HCPs—if unacceptable, there is a risk of lowering bowel screening uptake, which could potentially exacerbate health inequities in screening outcomes.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient and Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The info-comic book was co-created with two PPI networks, INVOLVE Hull and People and Research Together, Bowel Research UK, supported by Humber All Nations Alliance. The PPI network provided invaluable feedback on the development of the info-comic book, to ensure inclusivity and ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70315","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144558305","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":"Identifying the Impacts, Obstacles and Information Barriers for Parents of Children Living With Genetic Neurodevelopmental Disorders: A Qualitative Study","authors":"Karen J. Low,&nbsp;GenROC Consortium,&nbsp;Georgia Treneman-Evans,&nbsp;Sarah L. Wynn,&nbsp;Jenny Ingram","doi":"10.1111/hex.70340","DOIUrl":"https://doi.org/10.1111/hex.70340","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>A genetic neurodevelopmental disorder (GND) impacts all aspects of a child's and family's life. GNDs are rare; most have limited natural history data. We aimed to understand the impacts, obstacles, information barriers and coping strategies developed through parents' experience of receiving and living with a child's diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Participants</h3>\u0000 \u0000 <p>This analysis is part of the UK multicentre observational study of children with rare GNDs (GenROC). We conducted 17 semi-structured online interviews with parents of children with GNDs (aged 0–15 years) from November 2023 to March 2024. Data were analysed following the principles of thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We identified five themes. (1) <i>Impact on the family around a genetic diagnosis</i>: Distress begins well before a diagnosis is received; there is an impact upon the receipt itself and the ongoing impact on the family thereafter. (2) <i>Impact of uncertainty, lack of data and ‘rareness’</i>. The experience of parenting when so little is known about your child's condition. (3) <i>Relationships with health professionals</i>. Positive where parents are empowered and feel part of the team; negative where parents feel not heard/believed due to a professional lack of expertise/understanding. (4) <i>Parent mental health</i>: GNDs can be a significant burden to family life. The need to advocate for services has a negative impact. Feelings of isolation through rareness. (5) <i>Coping strategies and factors that help</i>: Support/Facebook groups are considered highly beneficial. Parents develop new positive identities, including that of advocate, professional and educator.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>GNDs represent a major challenge for families, clinicians and service providers. Distressed parents are struggling to cope with challenges and suffer from poor mental health. Psychosocial support, better signposting and health professional education may help.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient Contribution</h3>\u0000 \u0000 <p>Patient Participant Involvement group (comprising five mothers and one father of children with varying GNDs, one young person with a GND, and one genetics family charity representative) contributed to topic guide development and methodology and provided feedback on results.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70340","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144536959","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":"TRANSFER-I: Hospitalised Older Adults and Their Carers' Perspectives of the Transition Home: A Qualitative Study","authors":"Kirsten J. Parker,&nbsp;Caleb Ferguson,&nbsp;Julee McDonagh,&nbsp;Richard Lindley,&nbsp;Louise D. Hickman","doi":"10.1111/hex.70343","DOIUrl":"https://doi.org/10.1111/hex.70343","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Transitioning from hospital to home is a critical and fragmented process for acutely ill older adults and their carers. Despite widespread recognition of its importance, persistent gaps leave older adults vulnerable, highlighting the urgent need for safer transitions in care. Qualitative exploration into end-user experiences of this transition can help to identify gaps in care and inform the development of targeted, person-centred interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To explore the experiences of hospitalised older adults and their carers when they transition from hospital to home.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were purposively sampled during their contact with the rehabilitation and aged care service of a metropolitan hospital. Patients who had transitioned or were in the process of transitioning from hospital to home and informal carers to such patients were eligible. Verbatim transcripts were uploaded into NVivo and analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 19 separate interviews were conducted, 12 patient and 7 carer interviews. The patients' mean age was 79 years (range 70–88 years), and carers' mean age was 74 years (range 58–85 years). Qualitative analysis developed three main themes during the transition from hospital to home, including (1) Impacting identity and the journey home: independence, frailty and functional ability; (2) Navigating inpatient care, communication and a harmonised transition; and (3) Pillars of support and the reality of social isolation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Complex challenges were highlighted for hospitalised older adults and their carers during transitions from hospital to home, reinforcing the urgent need for holistic, patient-centred care. This study highlighted the compounding need to tailor discharge processes to individuals and calls for health services to embed patient-centred discharge communication into service provision. These are essential steps towards enhancing the quality and safety of transitional care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70343","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144536957","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":"Addressing Inequalities in Long Covid Healthcare: A Mixed-Methods Study on Building Inclusive Services","authors":"Ghazala Mir,&nbsp;Jordan Mullard,&nbsp;Amy Parkin,&nbsp;Cassie Lee,&nbsp;Jonathan Clarke,&nbsp;Johannes H. De Kock,&nbsp;Denys Prociuk,&nbsp;Julie L. Darbyshire,&nbsp;Sophie Evans,&nbsp;Manoj Sivan,&nbsp;LOCOMOTION Consortium","doi":"10.1111/hex.70336","DOIUrl":"https://doi.org/10.1111/hex.70336","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;Long Covid (LC) significantly impacts health, economic and social activities. Women, deprived, learning disability, homeless and some minority ethnic populations have high prevalence rates but low access to support, indicating health inequities in LC care.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Aim&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To identify health inequities in LC care and inclusion strategies that align with the priorities of people with LC.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design and Setting&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Mixed-methods study employing qualitative data from people with LC, professional experts, LC clinic staff and primary care data from North West (NW) London GPs.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Qualitative interviews with 23 people with LC and 18 professional experts explored the experience of diagnosis and support for people from disadvantaged groups. Framework analysis identified themes that informed the subsequent collection of clinic and primary care data. Staff from 10 LC clinics across England provided survey and qualitative data describing their initiatives to identify and reduce inequalities. Descriptive quantitative analysis of NW London adult primary care records (&lt;i&gt;n&lt;/i&gt; = 6078), linked to hospital use across England, explored LC diagnosis and care pathways for diverse groups of people with LC.&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;Study participants from disadvantaged groups reported delays in formal diagnosis and specialist referrals being initated and had low trust in healthcare services. They described difficulties in obtaining information, advice and support as barriers to access specialist referrals. LC clinics confirmed the under-referral of those from the most disadvantaged groups compared to the general population. Primary care data confirmed under-referral of people with LC to specialist clinics; however, incomplete data across the LC clinical pathway prevented an analysis of equity in referral patterns between population groups.&lt;/p&gt;\u0000 \u0000 &lt;p&gt;Clinics used various strategies to improve access and increase the flow of disadvantaged groups from primary care to LC services. Interventions included data collection to identify underserved groups, targeting outreach to primary care and community providers, adapting clinic provision and developing care pathways involving multidisciplinary teams (MDTs), primary and secondary care practitioners and third sector organisations. These activitie","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 4","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70336","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144524692","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}