Health Expectations最新文献

{"title":"Symptom Management in Chronic Heart Failure: Strategies and Behaviours From Patients’ Perspectives—A Scoping Review","authors":"Severin Pietsch, Sascha Köpke, Christa Büker, Irene Müller","doi":"10.1111/hex.70667","DOIUrl":"10.1111/hex.70667","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Chronic heart failure (CHF) affects millions and burdens health systems through high morbidity and mortality. Guidelines emphasise the need for self-management. Yet the specific strategies patients use to perceive, appraise, and respond to symptoms remain insufficiently described. Symptom management is a core component of self-management and directly shapes illness trajectories and quality of life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To identify and map behaviours and strategies of adults with CHF to manage symptoms in daily life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a scoping review of MEDLINE (PubMed), CINAHL (EBSCOhost), Livivo and Cochrane Library (2006–2024). Data were analysed using Mayring's qualitative content analysis. Categories were derived deductively from heart failure guidelines and Dodd's Symptom Management Model and inductively from included studies. The category system was aligned with Dodd's Symptom Management Model, which guided the structuring of findings into symptom experience, management strategies, and outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirty-one reports (qualitative, quantitative, mixed methods) met the inclusion criteria. Patients deploy diverse strategies across five domains: medication management, symptom monitoring, adjustment of daily activities, fluid and weight management, and lifestyle modification. Social support is pivotal. Many patients deviate from recommendations to balance demands, gaining short-term relief at the potential expense of long-term control. Such deviations function as pragmatic coping and indicate unmet information and structural needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Patients’ behaviours are integral to symptom management and should inform context-sensitive professional support and care. Involving family members and utilising digital tools could enhance monitoring, decision-making, and quality of life. Future work should apply Dodd's Symptom Management Model to clarify links between symptom experience, strategies, and outcomes and to develop approaches feasible and compatible with daily life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>After completing the core scoping review work, we conducted a PPIE session with a person living with heart failure (NYHA III","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70667","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147678742","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 Pre–Post Study of the Feasibility, Acceptability and Benefits of a Co-Design Approach for the Development of a Digital Suicide Prevention App for International Students","authors":"Christina Ng,&nbsp;Tanvi Shaikh,&nbsp;Jo Robinson,&nbsp;Jennifer Nicholas,&nbsp;Vivienne Browne,&nbsp;Gina Chinnery,&nbsp;Isabella Choi,&nbsp;Bailey Nation-Ingle,&nbsp;Kristal Allison,&nbsp;Ella Perlow,&nbsp;Michelle Lamblin,&nbsp;Ellie Brown,&nbsp;Gregory Armstrong,&nbsp;Madhavan Mani,&nbsp;Samuel McKay","doi":"10.1111/hex.70669","DOIUrl":"10.1111/hex.70669","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Interest in co-design for suicide prevention is growing, yet few studies have evaluated feasibility, acceptability and impact, particularly for culturally and linguistically diverse populations. This study assessed a co-design process used to develop a digital suicide prevention intervention with international students in Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>We conducted a mixed-methods pre–post evaluation across 10 student and three stakeholder workshops. Participants were 27 international students (57.7% with lived experience of suicidal thoughts and behaviours) from 18 countries and 21 sector stakeholders (education, well-being and student services). Surveys assessed feasibility, acceptability, safety, satisfaction, perceived benefits and confidence in co-design skills. Quantitative data were analysed using descriptive statistics and paired <i>t</i>-tests; open-ended responses were thematically summarised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Workshops were feasible, with high ratings for accessibility, support and safety. International students reported high acceptability and satisfaction, with significant increases in co-design confidence (e.g., collaborating, adapting, participating and influencing outcomes) and perceived benefits (greater mental-health literacy, empowerment, social connection and belonging). Stakeholders reported moderate to high acceptability and valued cross-sector learning and system insights; confidence ratings showed no measurable change. Safety ratings were high for both groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Co-design was feasible, acceptable and safe, and associated with benefits for participants. Findings support co-design as a practical, capacity-building approach for developing culturally responsive digital suicide-prevention initiatives for culturally and linguistically diverse populations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>An expert advisory group of international students with lived experience of suicide provided ongoing guidance. International students and sector stakeholders co-designed the intervention and contributed to planning, design, implementation and review.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":""},"PeriodicalIF":3.2,"publicationDate":"2026-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70669","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147678738","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":"Vital yet Fragile: Informal Networks of Support Among Young People Navigating Long Covid.","authors":"Zaira Clarke, Hannah Cowan, Tim Rhodes, Praveena Fernes, A Haines, Lucinda Leal","doi":"10.1111/hex.70611","DOIUrl":"10.1111/hex.70611","url":null,"abstract":"<p><strong>Introduction: </strong>Young people living with Long Covid face challenges accessing health care and social support. Previous qualitative research in the UK has described the 'invalidation' of Long Covid illness experience. It has been said that there is a 'double invisibility' produced by narratives that minimise the effects of Covid-19 among young people, which combine with a generalised lack of awareness of Long Covid itself. In this analysis, we look beyond the well-documented networks of online self-help and advocacy to trace how young people navigate, connect and maintain multi-sited alternative care networks to manage their everyday experiences of Long Covid.</p><p><strong>Methods: </strong>We draw on the analysis of qualitative interviews with 54 young people aged 15-25 with long-term health impacts from Covid-19, of whom 30 also participated in follow-up interviews. The sample includes young people with multiple genders, who identify with a range of ethnic identities, and who have experience of neurodiversity or additional disabilities. Interview transcripts were analysed to identify key themes, in collaboration with a group of peer researchers who are co-authors on this study.</p><p><strong>Results: </strong>We find that the informal networks that are navigated and created by young people play a vital role, but that they are also fragile. We present our findings across four themes-how informal networks afford young people validation in different ways; the material differences informal networks bring to young people's lives; the work that young people do to build and maintain these networks; and the fragility of support networks. We show that informal networks are not simply identified and found, but that they are 'made to work' by young people who do the work that brings informal networks together and that holds them in place.</p><p><strong>Conclusion: </strong>We conclude that there is a need to strengthen the vital work of informal care that is done by young people, but that alternative care networks should not be seen simply as a means of 'filling the gaps' of inadequate care. There is a need to build infrastructures that properly integrate formal with informal care in direct response to young people's experiences of Long Covid.</p><p><strong>Patient or public contribution: </strong>This qualitative study was undertaken in close collaboration with community partners and co-produced with young people affected by Long Covid, using participatory methods. Young people affected by Long Covid were involved in a series of consultations, workshops and meetings focused on the analysis of data and their development into project outputs, including as authors of this paper.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70611"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13080882/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147437904","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":"Community Health Workers' and Pharmacists' Perspectives of a CHW-Pharmacist Collaboration Model to Support Medication Adherence.","authors":"Carole Bandiera, Sabuj Kanti Mistry, Elizabeth Harris, Mark F Harris, Parisa Aslani","doi":"10.1111/hex.70630","DOIUrl":"10.1111/hex.70630","url":null,"abstract":"<p><strong>Introduction: </strong>Interprofessional collaboration is key in supporting patient medication adherence. Community health workers (CHWs) can bridge the gap between community and health services and can collaborate with pharmacists to support medication adherence. A collaborative CHW-pharmacist practice model was developed in the United States of America (USA), where CHWs and pharmacists collaborate to develop an action plan to address medication adherence barriers, and provide follow-up with patients. The present study aimed to investigate (1) opinions of pharmacists and CHWs working in Australia and New Zealand about this model, and (2) how the model could be implemented in their respective country.</p><p><strong>Method: </strong>Semi-structured interviews were conducted with CHWs and pharmacists working in Australia or New Zealand. Questions addressed the CHWs' and pharmacists' perspectives on the CHW-pharmacist collaborative practice model. Interviews were audio-recorded, transcribed verbatim, and coded using a thematically inductive process.</p><p><strong>Results: </strong>Twenty-nine participants (16 pharmacists and 13 CHWs) were interviewed, 19 worked in Australia and 10 in New Zealand. Participants' opinions about the model were categorised into three themes: (1) perceptions of the model, (2) challenges and (3) facilitators to the implementation of the model. Most participants recognised the model's potential to support medication adherence and appreciated the role of CHWs in bridging the cultural gap with patients. Reported challenges to model implementation included concern about the overlap of services with existing pharmacy services, cultural considerations, CHWs' limited clinical training, need for resources and sharing information with the healthcare team members. Facilitators involved clarification of roles, training for CHWs, and fostering collaboration with the other members of the healthcare team.</p><p><strong>Conclusion: </strong>While the CHW-pharmacist collaborative practice model was seen as valuable to support medication adherence in Australia and New Zealand, challenges were highlighted to be considered before implementation. Clear definition of roles and guidelines on collaborative practices to support medication adherence may facilitate the effective implementation of the model.</p><p><strong>Patient or public contribution: </strong>Patients, service users, care-givers, people with lived experience or members of the public were not involved in the study design or conduct of study, analysis or interpretation of the data or in preparation of the manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70630"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13080894/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147470297","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":"Tools and Resources for Engaging People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Research: Findings From a Survey and Community Consultation Events.","authors":"Lisa D Hawke, Abigail Amartey, Vivien Cappe, Hajar Seiyad, Susan Conway, Joshua Orson, Joshua Dunphy, Sean A Kidd, Natasha Y Sheikhan, Nicole Kozloff, Branka Agic, Lina Chiuccariello, Connie Putterman, Melissa Hiebert","doi":"10.1111/hex.70641","DOIUrl":"10.1111/hex.70641","url":null,"abstract":"<p><strong>Background: </strong>There is increasing recognition of the value of engaging people with lived and living experience and caregivers in mental health and substance use health research, in roles such as advisors, collaborators, and co-researchers. While tools and resources are required to support teams in conducting authentic engagement, it is unclear what is most needed by academic researchers and those with lived/living experience. This study aimed to identify the tools and resources most needed by academic researchers, people with lived/living experience, and caregivers to support engagement and to co-design a sample of tools.</p><p><strong>Methods: </strong>We conducted an online survey with 46 people with lived/living experience and caregivers and 46 academic researchers with engagement experience to identify what tools and resources were available and still needed to support engagement in research. We then held two consultations with 55 of the survey participants (38 lived/living experience and caregiver participants, 17 researcher participants). At the consultations, participants discussed the most highly needed tools to be co-developed. We then conducted a co-design phase of the project.</p><p><strong>Results: </strong>While a wide variety of tools and resources are available to people with lived and living experience and academic researchers, many people do not have access to tools and resources that they would consider useful. Participants gave shape to five potential tools and resources. A Lived/Living Experience and Caregiver Working Group then co-developed three tools-two meeting checklists and a career development tip sheet, which are provided in the Appendices.</p><p><strong>Conclusions: </strong>A wide variety of tools and resources may be helpful to support engagement. Research teams might consider reviewing the tools and resources that they have, sharing them with the broader engagement community, and seeking those potentially useful items that they would like to have but have not yet accessed. Future work is required to collect the tools available and offer them systematically to the engagement community for more effective lived/living experience and caregiver engagement in mental health and substance use health research.</p><p><strong>Patient and public contribution: </strong>All stages of this study were guided by a Lived/Living Experience and Caregiver Working Group, from grant development to manuscript co-authorship.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70641"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13080891/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147488617","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":"'Communication Is Crucial': A Qualitative Study of Patient Expectations of Diagnostic Tests in Emergency Medicine Practice.","authors":"Vinay Gangathimmaiah, Rebecca Evans, Tarun Sen Gupta, Karen Cupitt, Sharon Oakley, Karen Carlisle","doi":"10.1111/hex.70648","DOIUrl":"10.1111/hex.70648","url":null,"abstract":"<p><strong>Introduction: </strong>Value-based diagnostic tests improve patient safety. Understanding patient expectations can enhance the value of diagnostic tests in Emergency Departments. The aim of this study was to explore patient expectations about diagnostic tests to inform diagnostic stewardship in emergency medicine practice.</p><p><strong>Methods: </strong>A qualitative study of adult patients who had received care at Townsville University Hospital Emergency Department was conducted. The study was promoted through e-mail and social media. A convenience sample of consenting participants was recruited until data adequacy was achieved. Data were collected using focus groups with a pilot-tested guide to ensure clarity and consistency. Data were analysed by lead author using inductive content analysis to generate codes and themes. Themes were validated for credibility, transferability, dependability and confirmability using the following trustworthiness criteria: reflexivity, rich description, audit trail and participant validation.</p><p><strong>Results: </strong>Five focus groups were conducted with 22 participants. Therapeutic relationship, communication, patient-centred care and quality of care were identified as the major themes of patient expectations when seeking Emergency Department care. Diagnostic test deliberations were expected to be respectful, trustworthy, empathetic and culturally safe. Patient engagement in decision making about diagnostic tests was considered essential to address individual symptoms and concerns. Participants expressed varied expectations regarding discussion about rationale and risks of tests. Questioning clinicians about tests was perceived to be a challenge due to power imbalance. Participants disagreed with defensive tests performed to minimise medicolegal liability. Timeliness of tests was acknowledged as resource dependent. Clinician-patient conflicts about tests were thought to be best resolved through a collaborative approach.</p><p><strong>Conclusions: </strong>Patients have diverse and nuanced expectations of diagnostic tests in emergency departments. Patients trust emergency clinicians to listen empathetically, explain carefully and choose tests wisely. Patient values, preferences, life experiences and vulnerability should be factored into decision-making about tests. Clinician-patient partnerships grounded in effective communication are essential for diagnostic stewardship.</p><p><strong>Patient or public contribution: </strong>Two patients with lived experience were involved in study design, data collection and review of final manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70648"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13045229/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147516613","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":"'It Simply Required Far Too Many Steps and Made You Feel You Were Just a Number'. Family Caregivers' Experiences With Assisted Suicide in Austria: A Qualitative Study.","authors":"Tamina-Laetitia Vielgrader, Ricarda Mewes, Julia Fischer, Jana Marica Hluch, Maria Kletecka-Pulker, Gudrun Kreye, Elisabeth Lucia Zeilinger","doi":"10.1111/hex.70651","DOIUrl":"10.1111/hex.70651","url":null,"abstract":"<p><strong>Introduction: </strong>This study examines the lived experiences of family caregivers navigating the legal and emotional complexities of Austria's newly enacted Dying Decree Law.</p><p><strong>Methods: </strong>A qualitative interview study was conducted with nine family caregivers (eight women) of people seeking assisted suicide (PSAS) in Austria. Participants were recruited through purposive sampling through multiple recruitment channels. Interviews were analysed using thematic analysis (supported by MAXQDA).</p><p><strong>Results: </strong>Seven overarching themes emerged: (1) Dynamics of Dying and Saying Goodbye; (2) Inclusion versus Exclusion in the Decision-Making Process; (3) Role Negotiation and Responsibilities; (4) Bureaucratic and Legal Barriers; (5) Social Exclusion and Stigmatisation; (6) Support Needs and Structures; and (7) Ramifications in the Post-Mortem Phase. Family caregivers reported a lack of formal guidance, often leading to isolation and exhaustion. Open communication was repeatedly highlighted as essential in order to honour the PSAS's wishes and alleviate family caregivers' grief.</p><p><strong>Conclusion: </strong>Family caregivers function as advocates and bureaucratic managers while simultaneously serving as carers who provide the PSAS with physical and emotional support. Rather than relying on the legal framework alone, public policy should also formally acknowledge this dual role and deliver government‑led structural support for family caregivers to lessen their emotional and bureaucratic burden.</p><p><strong>Patient or public contribution: </strong>Family caregivers of PSAS were central to this research. We interviewed family caregivers about their experiences with assisted dying under Austria's Dying Decree Law, and incorporated their suggestions for addressing the identified challenges and improving support structures. Their contributions were integral to the study's findings and its focus on enhancing support structures for family caregivers within assisted dying systems.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70651"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13125716/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147534564","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":"Survivor Expectations and Experiences of One-Stop Crisis Centres in Bangladesh: A Qualitative Study of Health System Responsiveness to Gender-Based Violence.","authors":"Mst Sabrina Moonajilin, Sayema Mubashshira, Md Khalid Ibne Kamal, Rajib Ul Islam, Labina Taher, Tabeen Taher, Sabkat Kamal","doi":"10.1111/hex.70643","DOIUrl":"10.1111/hex.70643","url":null,"abstract":"<p><strong>Background: </strong>Gender-based violence (GBV) constitutes a significant public health concern that necessitates coordinated, survivor-centred health system responses. Health systems are essential in addressing GBV by delivering timely, respectful, and coordinated support to survivors. In Bangladesh, One-Stop Crisis Centres (OCCs) have been established within public hospitals to provide integrated medical, psychosocial, and legal services. However, there is limited research on how survivors evaluate these services and whether their expectations for survivor-centred care are fulfilled in practice. This study explored the perspectives of survivors and frontline providers regarding OCC services, with a specific focus on health system responsiveness.</p><p><strong>Methods: </strong>This qualitative study explored the experiences and expectations of survivors and service providers regarding OCC services in Bangladesh. In-depth interviews were conducted with GBV survivors (n = 32) and frontline service providers (n = 4) at two sites. Data were analysed using reflexive thematic analysis, guided by a health system responsiveness framework lens and the gender-responsive public services framework (availability, accessibility, acceptability, quality, and accountability) to explore how institutional practices shape survivor-centred care.</p><p><strong>Results: </strong>Five interrelated themes emerged. Survivors demonstrated limited awareness of OCC services before crisis events, with access frequently facilitated by police or emergency referrals. Institutional capacity constraints, such as staffing shortages and inadequate infrastructure, negatively impacted the timeliness of care. Experiences related to dignity and privacy were inconsistent. Some survivors reported supportive interactions, whereas others described judgmental questioning and breaches of confidentiality. Fragmented coordination among medical, legal, and social services disrupted the continuity of care. The absence of formal feedback mechanisms restricted opportunities for survivors to contribute to service improvement.</p><p><strong>Conclusions: </strong>Although OCCs constitute a significant institutional response to GBV care and the realities of service delivery. Enhancing awareness pathways, improving intersectoral coordination, and establishing survivor-centred accountability mechanisms could improve the responsiveness of integrated GBV services.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70643"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13125724/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147522803","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":"Emotional, Ethical and Cultural Challenges in Percutaneous Endoscopic Gastrostomy (PEG) Decision-Making: A Systematic Review and Meta-Synthesis.","authors":"Hande Nur Arslan, Gamze Bozkul, Sevilay Şenol Çelik","doi":"10.1111/hex.70294","DOIUrl":"https://doi.org/10.1111/hex.70294","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Percutaneous endoscopic gastrostomy (PEG) is a critical intervention for patients with neurological and gastrointestinal conditions affecting oral intake. While clinical guidelines emphasise medical indications, they often overlook the intricate emotional, ethical and cultural concerns that shape decision-making. This gap in understanding leads to variability in clinical recommendations and uncertainty among patients and their families. A deeper exploration of these factors is necessary to support informed, patient-centred decision-making.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Aim: &lt;/strong&gt;This systematic review and meta-synthesis aimed to explore the emotional, ethical and cultural challenges influencing PEG decision-making, while also considering the broader context of shared decision-making.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Design: &lt;/strong&gt;A systematic review and meta-synthesis of qualitative studies.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The review was conducted by systematically searching six databases, including CINAHL, Scopus, Web of Science, MEDLINE, PubMed and TRDizin. Only qualitative studies published between 2004 and 2024 were included to capture subjective experiences related to PEG decision-making. Studies focusing only on clinical outcomes or utilising quantitative methodologies were excluded. The review considered perspectives from adult patients, family members, caregivers and healthcare professionals while paediatric studies were excluded due to differences in decision-making dynamics. Data were synthesised using thematic analysis to organise findings into main themes and sub-themes.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 15 studies representing a variety of clinical settings and patient conditions, such as amyotrophic lateral sclerosis, advanced dementia and stroke, were included. These studies involved 141 patients (41.1%), 62 caregivers (18.1%) and 140 healthcare professionals (40.8%), ensuring a comprehensive analysis of perspectives on PEG decision-making. Seven major themes were identified: (1) emotional and psychological impact of decision-making, (2) ethical and moral considerations both patients and caregivers, (3) communication challenges and information gaps, (4) impact of healthcare professionals on decision-making, (5) ethical and emotional challenges in decision-making, (6) communication barriers and conflicting advice and (7) professional responsibility and advocacy. Family members and caregivers reported feelings of anxiety, guilt and regret, often due to uncertainty and inadequate communication. Healthcare professionals also faced challenges, including conflicting messages and a lack of comprehensive information.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Emotional, ethical and cultural factors significantly impact the PEG decision-making process involving patients, caregivers and healthcare professionals. Improving healthcare professionals' communication skills, developing decision aids and encouraging interdisciplinary collabora","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70294"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13108423/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147789853","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":"Cultural Adaptations of Healthcare Interventions: A Step-by-Step Guide.","authors":"Ed Breckin, Raabia Sattar, Nazreen Butt, Beth Fylan, Charles Vincent","doi":"10.1111/hex.70639","DOIUrl":"10.1111/hex.70639","url":null,"abstract":"<p><strong>Introduction: </strong>Cultural adaptations of healthcare interventions are widely advocated to improve effectiveness, acceptability, and equity for diverse populations. Despite the existence of several cultural adaptation frameworks, there remains a lack of practical, transferable guidance on how adaptations are undertaken in applied healthcare settings. Adaptation processes are frequently underreported, limiting transparency, reproducibility, and learning across studies, especially within a UK context. This paper addresses this gap by presenting a structured, step-by-step guide for culturally adapting healthcare interventions, using a healthcare toolkit, 'I Manage My Meds', as a case study for adaptation.</p><p><strong>Methods: </strong>A methodological case study approach was used to develop an eight-step, iterative guide for cultural adaptation. The guide integrates a phased structure model with the substantive domains of the Ecological Validity Model (EVM). Development was informed by collaboration with community stakeholders, patients, public contributors, translators, and researchers during the cultural adaptation of an existing healthcare intervention for older adults from a South Asian background in the UK. The guide was refined through repeated cycles of stakeholder engagement, pilot testing, and reflection, with adaptations systematically mapped to the eight EVM domains.</p><p><strong>Results: </strong>The resulting step-by-step guide provides practical direction on how to plan, implement, document, and refine cultural adaptations across a healthcare intervention. Key reflections from the guide are that cultural adaptations should be considered as cyclical processes rather than linear; deep-level adaptations often require reframing intervention assumptions; and sustained stakeholder collaboration is essential for maintaining intervention fidelity while improving cultural relevance. The guide is designed to be transferable across populations, settings, and intervention types.</p><p><strong>Conclusion: </strong>This paper contributes practical methodological guidance to an underdeveloped area of implementation research. By offering a transparent and replicable step-by-step guide, it supports researchers and practitioners to move beyond superficial adaptations and to more consistently document cultural adaptation processes. Wider use of this guide may improve the quality, equity, and reproducibility of culturally adapted healthcare interventions.</p><p><strong>Patient or public contribution: </strong>The guide was developed in collaboration with the Leeds Older People's Forum and community representatives from a South Asian background who formed a stakeholder group. Alongside our lay leader expert, a co-author on the paper, they contributed to reviewing intervention content, identifying culturally relevant adaptations, testing pilot materials, and refining the step-by-step guide through iterative feedback and collaboration.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 2","pages":"e70639"},"PeriodicalIF":3.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13080880/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147488655","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}