Health Expectations最新文献

{"title":"Listening to Women's Voices: A Patient and Public Involvement Exercise Exploring Vulval Reconstructive Surgery for UK Women With Female Genital Mutilation (FGM)","authors":"Juliet Albert, Janet Fyle, Njomeza Kartallozi, Christie Coho, Naana Otoo-Oyortey, Hekate Papadaki, Catrin Evans, Dalia Saidan, Sohier Elneil, Natasha Anderson-Foster, Jasmine Abdulcadir, Huda Mohamed, Aurora Almadori","doi":"10.1111/hex.70275","DOIUrl":"https://doi.org/10.1111/hex.70275","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>This article presents patient and public involvement and engagement (PPIE) work undertaken to explore FGM survivors' and stakeholders' views on reconstructive surgery, potential service models, care pathways, barriers to access and other support needs. The aim was to set research priorities, identify key themes and help inform subsequent research in the field.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A national research collective was established comprising over 20 stakeholders, including FGM survivors/women with lived experience, healthcare professionals, academics and advocacy groups. The group undertook two discussion workshops with FGM survivors (<i>n</i> = 11 participants), two national stakeholder events (<i>n</i> = 142 attendees) and significant advocacy and partnership-building activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Key insights were that FGM survivors would value reconstructive surgery to address body image concerns, genital pain and sexual difficulties. Potential barriers to surgery included stigma, safeguarding concerns, lack of awareness and fear. Significant gaps were identified around women's knowledge of clitoral anatomy, FGM types and specialist services. Survivors and stakeholders emphasised the need to complement surgical reconstruction with a comprehensive care pathway including trauma counselling and psychosexual therapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study highlights the importance of a survivor-led approach to FGM service development, as often the voices of FGM survivors are not included. The exercise demonstrated that, with the right approach, it is possible to engage ‘minoritised communities/individuals from the global majority’ and communities dispayed considerable willingness to participate in this sensitive research field. It also emphasises an urgent need for accessible, high-quality FGM care informed by the voices of those affected, to improve outcomes and support for FGM survivors in the United Kingdom.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Women with lived experience of FGM and women from FGM-affected communities, as well as other national stakeholders (including Non Government Organisation's and charities working with FGM survivors, academics, artists and campaigners were involved in the design and conduct of this study, analysis and interpretation of the data and preparation of the manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70275","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143938947","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":"Reporting on a Partnership to Co-Design a Digital Health Intervention With Young People Who Have Experienced Technology-Assisted Sexual Abuse","authors":"Sandra Bucci, Alice Newton, Pauline Whelan, Kim Cartwright, Prathiba Chitsabsean, Simon Foster, Victoria Green, Amanda Larkin, Rhiannon-Faye McDonald, Ethel Quayle, Matthias Schwannauer, Victoria Selby, Filippo Varese","doi":"10.1111/hex.70288","DOIUrl":"https://doi.org/10.1111/hex.70288","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>While Patient and Public Involvement and Engagement (PPIE) is a key element of research best practice across healthcare, the co-design process for digital health interventions (DHIs) remains under-reported. This study explores the co-design process of the i-Minds DHI, developed for young people exposed to technology-assisted sexual abuse (TASA), with a focus on advancing PPIE in DHI development. The research team collaborated with a Lived Experience Advisory Group (LEAG) to co-design the intervention, detailing activities, experiences, benefits, challenges and priorities identified throughout the process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study involved four participatory co-design workshops and focus groups with LEAG members. Key activities included identifying key features of the app design and content, gathering feedback on prototypes, discussing priorities for the app's function and trial design, and refining the language and content of user-facing materials. Features were prioritised using the MoSCoW method.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Recruitment of LEAG members, facilitated by the Marie Collins Foundation, emphasised the importance of involving trusted organisations when addressing sensitive topics like TASA, as many young people do not initially recognise themselves as victims. Key findings highlighted the importance of clear communication, structured processes (e.g., Terms of Reference) and financial remuneration for members to promote equity of opportunity. Agile development methods enabled iterative refinement of the app, integrating user feedback in real time. However, time and budget limitations constrained the integration of all desired features, with the MoSCoW method providing transparency in decision-making.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We offer recommendations for effective PPIE, including prioritising lived experience input early in research, allocating sufficient resources and fostering transparent communication. Despite challenges, such as limited diversity within the LEAG and remote meeting formats, PPIE was considered meaningful by members. This study provides a valuable framework for co-designing DHIs and improving inclusivity in PPIE efforts, particularly in sensitive research areas like TASA.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>This study was supported by a LEAG, which undertook the role of part","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70288","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143930491","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":"Reimagining Dementia Care: A Complex Intervention Systematic Review on Optimising Social Prescribing (SP) for Carers of People Living With Dementia (PLWD) in the United Kingdom","authors":"Jessica Marshall, Evie Papavasiliou, Louise Allan, Katherine Bradbury, Chris Fox, Matthew Hawkes, Anne Irvine, Esme Moniz-Cook, Aimee Pick, Marie Polley, Amy Rathbone, Joanne Reeve, Dame Louise Robinson, George Rook, Euan Sadler, Emma Wolverson, Sarah Walker, Jane Cross, the SPLENDID Collaboration","doi":"10.1111/hex.70286","DOIUrl":"https://doi.org/10.1111/hex.70286","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Carers of people living with dementia (PLWD) face a range of complex needs, including medical, emotional, social and practical challenges, often exacerbated by social isolation and barriers to accessing support. Social prescribing (SP) addresses these needs by increasing access to non-clinical support and services. However, existing research lacks detailed descriptions of SP interventions for carers of PLWD, with limited understanding of the needs they target, the reasons for participation, their effectiveness and their potential to improve outcomes for carers of PLWD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A complex intervention systematic review of SP for carers of PLWD was undertaken using iterative logic modelling and reported following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA-CI) extension statement and checklist. Six databases and grey literature were searched, supplemented by hand searching reference lists of included studies. Results were screened in a two-step process, followed by data extraction. Gough's Weight of Evidence Framework was used to assess the risk of bias in the included studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Fifty-two studies were included. Findings indicated SP for carers of PLWD in the United Kingdom is varied and operates in a largely uncoordinated process involving initiation by diverse stakeholders and institutions across multiple sectors. The classification of SP interventions for carers of PLWD is inconsistent, and participation is often opportunistic. Positive outcomes included improved carer mood, social connections, practical support, quality of life and better PLWD–carer relationships. However, negative outcomes were associated with intervention suitability, emotional impact, relevance and strained PLWD–carer relationships.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>While the evidence suggests SP is a promising intervention for carers of PLWD, its long-term impacts, challenges of tailoring prescriptions to carers' needs and overcoming logistical issues remain. Additionally, further research is required to evaluate long-term impact, investigate specific mechanisms to tailor SP to specific carer needs and explore in greater detail the PLWD–carer relationship and its effects on SP uptake and maintenance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contributions</h3>\u0000 \u0000 <p>A PPI advisory group was involved in ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70286","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143930490","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":"Long Covid Symptom Clusters, Correlates and Predictors in a Highly Vaccinated Australian Population in 2023","authors":"Essa Tawfiq, Rosalie Chen, Damian Alexander Honeyman, Rebecca Dawson, Mohana Kunasekaran, Adriana Notaras, Deepti Gurdasani, Helen Skouteris, Darshini Ayton, Chandini Raina MacIntyre","doi":"10.1111/hex.70273","DOIUrl":"https://doi.org/10.1111/hex.70273","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Limited data exists regarding long Covid burden following Omicron infection in highly vaccinated populations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To (1) characterise long Covid prevalence and predictors and (2) identify key symptom clusters and their correlates among long Covid patients, during an Omicron-predominant period in a highly vaccinated population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>Anonymous, online, cross-sectional survey.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting</h3>\u0000 \u0000 <p>January 2023, Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Participants</h3>\u0000 \u0000 <p>Residents aged ≥ 18 years with self-reported history of test-positive Covid-19.</p>\u0000 \u0000 <p>The main variables studied were socio-demographic characteristics, Covid-19 risk factors, vaccination, infection history and experiences with long Covid.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main Outcome Measures</h3>\u0000 \u0000 <p>Long Covid symptoms. Symptom-based clustering was used to identify long Covid symptom clusters and their functional correlates. Predictors of long Covid occurrence and severity were assessed using multivariable logistic regression.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Overall, 240/1205 participants (19.9%) reported long Covid. Long Covid risk was significantly higher for women OR 1.71 (95% CI: 1.17–2.51), people with comorbidities 2.19 (95% CI: 1.56–3.08) and those using steroid inhalers for Covid-19 treatment (2.34 [95% CI: 1.29–4.24]). Long-Covid risk increased with increasing Covid-19 infection severity (moderately severe symptoms: 2.23 [95% CI: 1.50–3.30], extremely severe symptoms: 5.80 [95% CI: 3.48–9.66], presented to ED/hospitalised: 7.22 [95% CI: 3.06–17.03]). We found no significant difference in the likelihood of long Covid between the Omicron and pre-Omicron periods, vaccination status and participant age.</p>\u0000 \u0000 <p>We identified two long Covid clusters (pauci-symptomatic, <i>n</i> = 170, vs. polysymptomatic, <i>n</i> = 66). Polysymptomatic cluster membership was associated with worse functioning (impacts on work, moderate activity, emotions and energy). Severity acute infection was strongly predictive of polysymptomatic cluster membership (5.72 [2.04–17.58]). Mon","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70273","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143919909","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":"Implementation, Processes and Outcomes of Advance Care Planning: A Culturally and Contextually Appropriate Programme Theory Developed in Chinese Long-Term Care Facilities","authors":"Yuxin Zhou, Ariel Wang, Clare Ellis-Smith, Debbie Braybrook, Haixia Feng, Richard Harding","doi":"10.1111/hex.70291","DOIUrl":"https://doi.org/10.1111/hex.70291","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite advance care planning (ACP) being associated with positive outcomes for residents in long-term care facilities (LTCFs), the causal pathways between ACP and these outcomes are context-specific and less understood. This lack of clarity can hinder the cultural adaptation and evaluation of ACP interventions. This study aimed to develop a programme theory that outlines the causal pathways through which the ACP is hypothesised to achieve impacts in Chinese LTCFs, with a focus on understanding its implementation, processes and outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Exploratory qualitative design incorporating Theory of Change (ToC) methodology. Two ToC workshops (one face-to-face and one online) were held with 37 participants experienced in caring for residents or older people. The process was informed by a realist review and primary qualitative study. A programme theory was developed through thematic analysis, generating a ToC map depicting implementation, processes and outcomes of ACP in LTCFs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The programme theory was constructed to outline the causal pathways of ACP in LTCFs, populating five ‘precondition’ domains: (1) buy-in from government and facility leadership, (2) availability of external and internal resource, (3) adequate training and awareness for public and facility, (4) identification of residents who are ready for ACP and (5) culturally sensitive communication. Nine intervention components were identified that target preconditions, such as raising ACP awareness and providing staff training and mentoring. The potential impacts of ACP were identified, for example, fostering public attitudes towards a ‘good death’ and increasing public awareness and acceptance of palliative care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our mid-range programme theory can serve as a heuristic tool, adaptable for context-specific ACP interventions in other countries, enhancing the likelihood of achieving intended impacts. In particular, intervention components focused on family involvement can be transferable to East Asian regions, where relational autonomy and family-centred decision-making are emphasised. The programme theory is ready for feasibility testing for residents in Chinese LTCFs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contributions</h3>\u0000 \u0000 <p>We were guided by patient and public involvement members including two residents and","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70291","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143926061","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":"Families' Perceptions of Powered Mobility for Participation in Children With Spinal Muscular Atrophy Type 1: A Photovoice Study","authors":"María Coello-Villalón, Cristina I. Díaz-López, Purificación López-Muñoz, Helena Romay-Barrero, Soraya Pacheco-da-Costa, María Plasencia-Robledo, Egmar Longo, Rocío Palomo-Carrión","doi":"10.1111/hex.70278","DOIUrl":"https://doi.org/10.1111/hex.70278","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background and Purpose</h3>\u0000 \u0000 <p>Spinal muscular atrophy type 1 (SMA1) is a neuromuscular disorder that severely limits movement and autonomy in young children. Early powered mobility has proved to be a valuable intervention to promote participation, social engagement and emotional well-being. To understand the potential impact of powered mobility, it is critical to explore children and families' experiences with participatory methodologies, such as the photovoice method.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To explore families' perceptions of powered mobility for participation in children with SMA Type 1, with a focus on emotional well-being, social engagement and accessibility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methodology</h3>\u0000 \u0000 <p>A qualitative descriptive study using the photovoice methodology was implemented, in which families documented their perceptions and experiences through photographs and reflective narratives over a period of 4 weeks. Children were encouraged to use a power mobility device in different activities in natural environments, after a training intervention of 12 weeks with power mobility. Families were asked to capture their experiences through photos and participate in different interviews to report their perceptions. Data was collected through photos documentation and during interviews.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting and Participants</h3>\u0000 \u0000 <p>This study was conducted in natural environments, home and community, in Spain. The participants were six children with SMA1 (aged 13–28 months) and their families.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Key Findings</h3>\u0000 \u0000 <p>Three major themes emerged: (1) Emotional and Social Engagement: Families reported that powered mobility enhanced children's confidence, emotional expression and ability to interact with family members and peers. (2) Barriers to Accessibility: Families encountered challenges such as limited home space, restricted public accessibility and the need for individualised adaptations. (3) Collaboration as a Key Factor: Parents emphasised the importance of collaboration with professionals in facilitating meaningful use of powered mobility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Interpretation</h3>\u0000 \u0000 <p>The findings align with previous research demonstrating the benefits of powered mobility in promoting independence, social interaction and participation. However","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70278","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143919793","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 the Health Needs of Underserved Populations Through Public Contribution: Prioritisation and Development of a Peer Support Intervention for Sexual and Gender Minority Forced Migrants","authors":"Tommy Carlsson,&nbsp;Rogers Kissiti,&nbsp;Maria Jirwe,&nbsp;Elisabet Mattsson,&nbsp;Louise von Essen,&nbsp;Maria Gottvall","doi":"10.1111/hex.70277","DOIUrl":"https://doi.org/10.1111/hex.70277","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The health of underserved populations, including sexual and gender minority forced migrants, is a pressing global concern. Public contribution in research has the potential to enhance prioritisation and aid in intervention development, but has been criticised due to a lack of sufficient diversity and engagement with underserved populations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The core research team conducted eight workshops together with eight experts by lived experience to prioritise and guide future peer support intervention research. Activities included brainstorming, pathway mappings, ranking procedures, storytelling exercises, photovoice sessions and individual open-ended writing sessions. Open-ended reflective meetings and manifest content analysis of material, as well as documentation, guided the progress towards final results.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Peer support was identified as an intervention with the potential to reduce mental health burdens, enhance the capacity to integrate into society and provide access to basic needs. Peer support interventions aiming to reduce health inequities by promoting language proficiency and employment attainment were identified as prioritised areas. A range of considerations and barriers regarding the modality of interventions, the training of peer supporters and recruitment strategies needs further examination in research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings illustrate the importance of public contribution when planning research addressing support for underserved and marginalised populations. Public contribution efforts targeting underserved populations such as ours will help researchers gain an in-depth understanding of prioritised research questions and pragmatic study procedures. In regard to research for sexual and gender minority forced migrants, we recommend prioritisation of intervention development that promotes mental health and reduces loneliness through support from peers in group settings and from peer mentors, informational support and capacity-building.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Representatives acting as experts by lived experience contributed as research partners throughout the procedures and workshops.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70277","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143908966","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":"From Doubt to Diagnosis: Canadian Patient Perspectives on a Limb-Girdle Muscular Dystrophy Diagnosis","authors":"Homira Osman,&nbsp;Zainab Adamji,&nbsp;Gerald Pfeffer,&nbsp;Jodi Warman-Chardon,&nbsp;Pryamvada Varma,&nbsp;Jenna Keindel,&nbsp;Stacey Lintern","doi":"10.1111/hex.70271","DOIUrl":"https://doi.org/10.1111/hex.70271","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;Limb-girdle muscular dystrophies (LGMDs) encompass a rare and genetically diverse set of disorders, posing challenges in diagnosis due to the absence of distinct pathological features, leading to frequent misdiagnoses and inadequate symptom management. Yet, there is a scarcity of published data on how patients perceive the diagnostic journey of LGMD. Our aim was to unveil the firsthand experiences of individuals with LGMD to gain insight into their perspective on the diagnosis process. This study comprehensively captures the LGMD patient and caregiver experiences—from symptom onset through diagnosis to current disorder management.&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;Insights into the lived experience of LGMD were consolidated from semi-structured interviews and a cross-sectional mixed-methods survey of quantitative and qualitative questions. Quantitative data were analysed using descriptive statistics and frequencies, while inductive content analysis was applied to qualitative responses. During the validation phase, patient authors validated and prioritised the insights and overarching themes.&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;From 108 participants (104 people with LGMD and 4 parent caregivers), five overarching themes were identified. These themes include (1) difficulty with diagnostic process, with 8 years noted as time from the symptom onset until they obtain the definitive diagnosis; (2) difficulty obtaining genetic testing and specialist care; (3) sense of disconnect with healthcare professionals, often resulting from lack of knowledge and awareness of the condition; (4) a state of emotional distress, feelings of hopelessness, depression, fear and anxiety with the diagnosis process; and (5) impact on mobility and ambulation.&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;The LGMD diagnosis journey is marked by barriers and misdiagnoses, leading to considerable diagnostic delays. Overcoming these challenges requires increased awareness among healthcare professionals and improved patient access to genetic testing.&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;Patients with LGMD were involved as research partners in all phases of this study, including identifying the research question and the need for an assessment of the diagnosis journey for LGMD in Canada. The patients also worked with the authors to interpret and validate the data collected and contribute","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70271","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143909021","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":"Personalisation at the Core of Success: Process Evaluation of the LISTEN Randomised Controlled Trial Evaluating a Personalised Self-Management Support Intervention for People Living With Long Covid","authors":"Fiona Leggat,&nbsp;Anna Torrens-Burton,&nbsp;Bernadette Sewell,&nbsp;Nick Sevdalis,&nbsp;Monica Busse,&nbsp;Anne Domeney,&nbsp;Judith Parsons,&nbsp;Maria Ines de Sousa de Abreu,&nbsp;Fiona Jones","doi":"10.1111/hex.70270","DOIUrl":"https://doi.org/10.1111/hex.70270","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 development and evaluation of rehabilitation interventions designed to support people with Long Covid (LC) remains an important ongoing priority. Many people with LC experience episodic, debilitating symptoms that can reduce their ability to engage in all areas of activity. The Long CovId personalised Self-managemenT support co-design and EvaluatioN (LISTEN) trial co-designed and evaluated a personalised self-management support intervention to build confidence and support people to live better with LC. This paper describes the context, implementation, mechanisms of impact and impacts from the LISTEN intervention, in comparison with usual LC services accessed within the National Health Service (NHS).&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 mixed methods process evaluation was nested within the LISTEN pragmatic, multi-site, randomised controlled trial. Data were collected from sites in England and Wales between September 2022 and January 2024. Observations and focus groups with healthcare practitioners (HCPs) delivering the intervention were conducted to assess fidelity. Standardised implementation measures, focussed on intervention feasibility, acceptability and appropriateness, were gathered from HCPs and intervention participants. Semi-structured interviews were undertaken with a subset of participants across both trial arms. Data were analysed independently using descriptive statistics, or reflexive thematic analyses, and subsequently integrated, drawing upon the Consolidated Framework for Implementation Research v2.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Findings&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Thirty-six HCPs participated in the process evaluation, and 197 intervention participants completed standardised implementation measures. Across both trial arms, 49 participants took part in semi-structured interviews. Six integrated themes were constructed from all data sources describing and illustrating links between the context, implementation, mechanisms of impact and impacts: ‘Delivery during uncertainty and ambiguity’, ‘Diversity and consistency of usual care’, ‘Drivers for self-care and the impact of self-generated expertise’, ‘Appropriate if unexpected support’, ‘Personalisation at the core of success’ and ‘A spectrum of change’.&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;The LISTEN intervention is an appropriate, feasible intervention for participants and HCPs. The intervention can be delivered to a high level of fidelity following training and with ongoing HCP support. Access, receipt and perceptions of NHS LC services ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70270","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143905042","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":"Illness Expectations and Asthma Symptoms: A 6-Month Longitudinal Study","authors":"Eleonora Volpato,&nbsp;Valentina Poletti,&nbsp;Paolo Banfi,&nbsp;Andrea Bonanomi,&nbsp;Francesco Pagnini","doi":"10.1111/hex.70285","DOIUrl":"https://doi.org/10.1111/hex.70285","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;After receiving a diagnosis, individuals often develop expectations about how their condition will evolve. This cognitive framework, known as ‘Illness Expectations’ (IEs), encompasses future-oriented beliefs regarding the course of the illness and its symptoms. In chronic conditions such as asthma, IEs may play a critical role in shaping patient-reported outcomes and clinical markers of disease progression. This study aims to empirically evaluate the impact of IEs on asthma symptoms and respiratory function.&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 cohort of 310 individuals diagnosed with asthma was followed over a 6-month period, with three assessment points. Asthma control was measured using the Asthma Control Test (ACT), while respiratory function was evaluated through forced expiratory volume in 1 s (FEV&lt;sub&gt;1&lt;/sub&gt;) using spirometry. IEs were assessed using the validated ‘Illness Expectation Test’ (IET), which captures both explicit (conscious) and implicit (unconscious) expectations. Predictive analyses were conducted using latent growth modelling and linear regression to examine the influence of IEs on asthma symptoms and respiratory function over time.&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;People with more negative explicit IEs about their asthma reported worse symptoms over time (&lt;i&gt;β&lt;/i&gt; = −0.50, SE = 0.21, &lt;i&gt;p&lt;/i&gt; = 0.01). Implicit IEs were not statistically significant (&lt;i&gt;β&lt;/i&gt; = −0.014, SE = 0.008, &lt;i&gt;p&lt;/i&gt; = 0.09). Explicit IEs about symptom progression were also associated with changes in lung function, with more negative expectations predicting greater declines in respiratory performance (&lt;i&gt;β&lt;/i&gt; = 0.51, SE = 0.11, &lt;i&gt;p&lt;/i&gt; = 0.001).&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;These findings suggest that IEs may be meaningfully associated with asthma outcomes, highlighting their potential relevance in understanding patient experiences and symptom perception. These results support further research into interventions targeting cognitive frameworks, with the aim of informing more personalised, patient-centred approaches to asthma management.&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 study was developed in response to patient-reported challenges in asthma management, particularly around understanding and managing IEs. Patients contributed to identifying key areas of concern, and their perspectives informed the choice of outcomes and tools. Wh","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70285","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143908950","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}