Health Expectations最新文献

{"title":"Using Codesign to Develop a Health Literacy Intervention to Improve the Accessibility and Acceptability of Cardiac Services: The Equal Hearts Study","authors":"Denise Azar, Sofia Wang, Liz Flemming-Judge, Anna Wong Shee, Rebecca Jessup, Laveena Sharma, Shihoko Fukumori, Jason Talevski, Stephen J. Nicholls, James Harris, Laura Alston, Catherine Martin, Ernesto Oqueli, William van Gaal, Alison Beauchamp","doi":"10.1111/hex.70328","DOIUrl":"https://doi.org/10.1111/hex.70328","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The burden of coronary heart disease (CHD) is disproportionately greater among socio-economically disadvantaged groups. Health services play a crucial role in addressing this social gradient by ensuring equitable access to care. However, there is limited evidence on effective strategies to improve health service accessibility for CHD patients, particularly those that are codesigned with people with lived experience and clinicians. The Equal Hearts study aimed to codesign a health literacy-based intervention to improve the accessibility of hospital-based cardiac services for underserved population groups with CHD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study employed a mixed-methods approach based on codesign principles. The study comprises three phases: identifying and understanding the problem, codeveloping an intervention, and translating the intervention into practice. Phases 1 and 2 are reported in this paper and included focus groups, interviews and an intervention development workshop. Participants for focus groups and interviews were recruited from four health services in [Victoria] and included patients with CHD, health consumers from culturally diverse communities and clinicians. Findings from focus groups and interviews were analysed via thematic analysis using Levesque's conceptual framework to identify health literacy barriers to accessibility of cardiac services. These barriers were prioritised in a codesign workshop with cardiac patients, health consumers and clinicians.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirty-seven cardiac patients, 10 clinicians and 44 culturally diverse health consumers participated in focus groups/interviews. Among these participants, eight cardiac patients/carers and five clinicians attended the workshop. Cardiac patients reported a lack of preparedness for hospital discharge and feeling ‘lost’ and uncertain about how to confidently manage their health at home after a cardiac event. A codesigned intervention—The Patient Discharge Action Plan—aims to improve patients' transition from hospital to home.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Using a codesign approach and health literacy principles, a health service intervention was developed to improve accessibility of cardiac services. The Patient Discharge Action Plan is currently being evaluated in a pilot RCT.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Two cons","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70328","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144308674","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":"Designing a Flexible and Inclusive Approach for Public and Community Involvement in Research With People Who Are Homeless or Vulnerably Housed: Critical Reflections From the I Am More Than… Project","authors":"Mel Hughes, Kate Jupp, Cathy Beresford, Jim Robertson, Annabel Wathen, Tanya Bailey, Siobhan Lennon-Patience, Mike Graham, Deano Pickering, Helena Posnett","doi":"10.1111/hex.70325","DOIUrl":"https://doi.org/10.1111/hex.70325","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People who are homeless or vulnerably housed face significant health inequities and yet are rarely involved in health and social care research as participants, public contributors or co-researchers. The <i>I Am More Than…</i> project was developed to address this lack of inclusion by working in partnership with community organisations and individuals with lived experiences of being homeless or vulnerably housed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To co-design a flexible and inclusive approach for public and community involvement in research (sometimes referred to as public and patient involvement or PPI).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The project drew on a range of co-production and participatory research strategies, with input from various stakeholders, to identify and address enablers and barriers to participation. Community researchers with lived experience of homelessness or being vulnerably housed were central to all stages of the project, including the co-design of strategies to engage people through conversations, interviews, creative outputs and stakeholder events.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We identified core principles for inclusive public and community involvement in research. including the need to: develop relationships first and tasks second; gain a deep understanding of communities and their priorities; harness lived experience expertise; however someone may choose to share it; go at the pace of trust; and work in partnership with voluntary and community sector organisations who are embedded in their communities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Developing a flexible and inclusive approach to public and community involvement in research required shifting from a transactional approach to a relational approach. The project demonstrated the importance of building trust, working in partnership and being flexible and responsive to people's everyday realities for genuine inclusion to be achieved.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This is a co-produced project between a university, an integrated care system, two community organisations and people experiencing homelessness or being vulnerably housed. Individuals with lived experience participated as community researchers, shaping the design, methods and o","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70325","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144273449","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Feasibility and Relevance of Collecting Adolescent Health Indicators in Humanitarian Settings: Results From the West Bank","authors":"Aisha Shalash, Niveen Abu Rmeileh, Dervla Kelly, Khalifa Elmusharaf","doi":"10.1111/hex.70324","DOIUrl":"https://doi.org/10.1111/hex.70324","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is a critical concern for adolescent health in the Eastern Mediterranean region especially during humanitarian crises. This study emphasises not only the need for measuring key health indicators but also how to collect the information effectively, particularly in the West Bank. These efforts will guide evidence-based policies and interventions for this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting and Participants</h3>\u0000 \u0000 <p>This mixed-methods study aimed to determine the perceived relevance and feasibility of collecting a set of adolescent health indicators in the West Bank. Stakeholders filled out a questionnaire and participated in a workshop where they ranked 50 indicators based on context specificity, usefulness, feasibility, timeliness and resource availability. The researchers analysed the data and categorised the indicators as feasible and relevant, feasible but irrelevant, not feasible but relevant, or not feasible and irrelevant.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The results of the study show that 22 out of the 50 adolescent health indicators were perceived as both feasible and relevant to be collected in the West Bank. These indicators cover a range of content areas, including determinants of health, mortality, morbidity, health behaviour and risks, policies, systems, interventions, and mental health and well-being. However, some indicators were deemed relevant but not feasible due to cultural norms, stigma and wording issues, while others were considered not relevant and not feasible, including certain indicators related to alcohol use and unavailable practices and services. Despite the challenges, stakeholders acknowledged the importance of creating a national list of adolescent health indicators to guide evidence-based programmes and policies, emphasising the need for governmental support and infrastructure for data collection.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Cultural norms, stigma and wording issues emerged as significant challenges in data collection. Recommendations include implementing comprehensive sexual education, improving mental health indicator wording and investing in resources to support data collection and measurement. These findings will help guide evidence-based programmes and policies for adolescent health in the region. The establishment of a national list of adolescent health indicators services is a milestone for standardising data collection, guiding health programme planning and fostering accountability. Overall, this study's findings will","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70324","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144273112","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":"Promoting Patient Safety Through Patient Engagement at the Organisational Level: A Delphi-Based Needs Assessment Among Patient and Family Advisory Councils","authors":"Larissa Brust, Yannick Blum, Matthias Weigl","doi":"10.1111/hex.70319","DOIUrl":"https://doi.org/10.1111/hex.70319","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Patient and family advisory councils (PFACs) are increasingly recognised as a promising approach for improving patient safety (PS) through patient engagement (PE) at the organisational level. However, PFAC stakeholders often lack the necessary knowledge and competence to engage effectively in PS-related issues with healthcare organisations. Moreover, evidence on specific needs for knowledge and competence improvement remains limited, hindering the development of future interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>This study aimed (a) to identify needs for PS-related competency and knowledge improvement among PFAC stakeholders and (b) to assess current and desired levels of PFAC engagement, roles and factors influencing PFACs' work.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>We established an exploratory mixed-methods design with a modified, two-round Delphi approach. We first used qualitative content analysis to analyse interview data (Round 1) and then consolidated statements for a quantitative questionnaire (Round 2). Responses were analysed descriptively and for consensus (criterion: 85% agreement). Mixed-methods analysis was conducted sequentially and convergently.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting and Participants</h3>\u0000 \u0000 <p>PFAC stakeholders are affiliated with German healthcare organisations, including patient representatives and professionals from healthcare organisations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main Variable and Outcome Studied</h3>\u0000 \u0000 <p>(a) Needs for competency improvement on PS and communication, self-assessed knowledge and preferred training formats and (b) PFAC engagement levels, roles and factors influencing PFACs' work.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Across 6 different oncology-focused PFACs from German university hospitals, 19 stakeholders participated across both rounds. Seventeen needs for competency improvement in PS and communication were identified. After establishing consensus, 10 distinct domains of need were agreed upon (e.g., PS fundamentals, legal basis for PE and respectful communication). While PFAC engagement in PS was inconsistent, participants expressed a strong desire for further involvement. Key implementation factors included limited access to organisational processes, lack of resources and unequal conditions between research- and care","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70319","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244175","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":"‘They Just Said It Was My Mood. I Was Trying to Get Attention’: Exploring Barriers to Psychological Support for People Impacted by Contaminated Blood in England","authors":"Eva Cyhlarova, Jessica Carlisle, Emily Warren, Martin Knapp, Ellen Nolte","doi":"10.1111/hex.70317","DOIUrl":"https://doi.org/10.1111/hex.70317","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Between the 1970s and the early 1990s, over 30,000 individuals in the United Kingdom were infected with human immunodeficiency virus (HIV) and/or hepatitis C virus following treatment with NHS-supplied blood and blood products, with devastating consequences. This study aims to better understand the psychological support needs of these individuals and their families, and to identify barriers to accessing support in England.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Forty-one individuals infected with HIV and/or hepatitis C virus and 11 affected family members were interviewed, as well as 14 mental health practitioners and experts involved in psychological support services across the United Kingdom. Data were analysed using a thematic approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Only a few infected and affected participants had received mental health support, and only just over half knew about the availability of funding for psychological support from the England Infected Blood Support Scheme. Participants identified a number of barriers preventing them from accessing support. These included personal and social factors such as family responsibilities, stigma and secrecy. Structural barriers to access were a lack of available mental health support, limited understanding among professionals of the contaminated blood scandal, discrimination in healthcare, and difficulties finding suitable therapists and navigating referral systems. When individuals managed to access support, it was often perceived as inadequate or ineffective. Practitioners also identified a substantial need for psychological support within the infected and affected communities, and described support provided as inadequate, with little guidance and limited availability of competent practitioners. Practitioners also emphasised the need for long-term and tailored treatment approaches to address the profound mental and physical health impacts of infected blood.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Existing psychological support systems in England, both public and private, fail to meet the needs of infected and affected communities. Our findings show a substantial and increasing need for accessible, effective and individualised services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This study was carried out from August 2022 to August 2023, during the period when the statutory Infected Blood Inquiry ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70317","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244174","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":"Including Prisoners in Research Design: Codevelopment of a Practical Guidance Toolkit to Support Intervention Delivery to Address the Physical and Mental Health of Older Prisoners (PAMHOP) Study","authors":"Amanda E. Perry, Thirimon Moe-Byrne, John Schofield, Lisa Ashton, Noemia Siqueria, Sarah Knowles, Prof Rachel Churchill, Tim Colman, Steve Parrott, Kevin Williamson","doi":"10.1111/hex.70246","DOIUrl":"https://doi.org/10.1111/hex.70246","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Over the last decade, the number of older people in custody with common mental and physical health problems has increased. Little is known about the effectiveness of interventions targeting this age group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To codevelop a practical guidance toolkit(s) to support the delivery of interventions to benefit the common mental and physical health of older people in custody.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twelve 3-h workshops between March and April 2023 were conducted with 26 participants at two prison sites in the North of England. The six workshops in each site consisted of research-based activities and interlinked taster sessions. The research data were collected by the research team to identify the causal links between common mental and physical health problems; activity preferences; the feasibility, acceptability and sustainability of delivering the activities and engagement barriers, which formed a bespoke questionnaire. The taster sessions (drugs and alcohol for males, chair yoga for females, books and crafting, and a historical session for both males and females) were delivered by the research team and prison staff. Feedback from the workshop participants was documented using an adapted questionnaire to record the experiences of those taking part. A micro-costing framework was used to estimate the cost.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Similar common mental and physical health factors were listed by males and females. Symptoms of common mental health problems were improved by engaging with others of the same age, conducting activities outside and a consistent prison regime. Activity preferences (e.g., creative activities) were underpinned by a sense of purpose, learning new things, gaining and sharing skills. Engagement was supported by building good relationships and offering guidance through peer support, with activities led by staff of a similar age. Activities were more likely to be deemed feasible, acceptable and sustainable when aligned with the prison strategy and in conjunction with the regime. The average cost per participant for the intervention delivery was higher for males than females (£157 vs. £89).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Older people in custody report high levels of mental and physical health problems. Engagement with people in custody helps to support the development of interventions maximis","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70246","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244547","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":"Codeveloping a Novel Intervention for People With Post-COVID Condition: The Balance-ACT Study","authors":"Lily Felton, Michail Kalfas, Debbie Brewin, Carole Beckwith, Tasbiha Khan, Caroline Jolley, Nicholas Hart, Emma L. Duncan, Timothy Nicholson, Oliver Witard, Julie Moore, Alan Metcalfe, Gerrard F Rafferty, Trudie Chalder","doi":"10.1111/hex.70320","DOIUrl":"https://doi.org/10.1111/hex.70320","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Some people experience persistent symptoms, such as fatigue, brain fog and breathlessness, long after the onset of COVID-19 infection. This is known as the post-COVID syndrome (PCS). We developed a unique and holistic psycho-physiological intervention that integrates Acceptance and Commitment Therapy (ACT), a structured talking therapy, with principles of homeostasis. This aims to provide targeted support and treatment strategies for effectively managing the long-term repercussions of the condition and improve patient outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This empirical study was informed by theory and other research strands. These strands included a qualitative study of people with lived experience, a scoping review of interventions for fatigue (including rehabilitation) and insights from a patient and public involvement (PPI) group. The PPI group were actively involved in the development of the intervention, manuals and overall study management, ensuring it was relevant, ethical and aligned with patient preferences and needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The qualitative study uncovered the tangible contexts in which the intervention would be implemented, and the attraction of Balance-ACT for those living with PCS. People living with PCS (<i>n</i> = 19) and health care professionals (HCPs; <i>n</i> = 12) provided overall endorsement for the intervention. Through an iterative process, their feedback, alongside input from the PPI group, informed the development of key materials, including a therapist manual, participant handbook, mindfulness recordings and an animation. Therapists were trained, and a novel fidelity measure was developed to ensure adherence to Balance-ACT principles.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We used an iterative approach to develop the Balance-ACT intervention, which was acceptable to patients and HCPs. Subsequent research will examine the efficacy of Balance-ACT.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>This article represents work conducted as part of the Balance-ACT project. People with the post-COVID condition (PCC) were involved throughout all aspects of this study, in line with the National Institute for Health and Care Research framework, and contributed in several key ways. It ensured the research captured a diverse range of illness experiences. The study design was refined and addressed potential ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70320","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244513","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":"Can a Public and Patient Involvement (PPI) Informed Participant Information Leaflet (PIL) Improve Trial Recruitment, Retention, and Quality of Decision Making? Results of a Randomised Controlled Double-Blind Study Within a Trial (SWAT)","authors":"Linda O'Neill, Peter Knapp, Suzanne L. Doyle, Sanela Begic, Emily Smyth, Neil Kearney, Sophie Grehan, Adwoa Parker, Peter Browne, Ricardo Segurado, Deirdre Connolly, Jacintha O'Sullivan, John V. Reynolds, Emer Guinan, Juliette Hussey","doi":"10.1111/hex.70321","DOIUrl":"https://doi.org/10.1111/hex.70321","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Public and patient involvement (PPI) may be utilised to improve aspects of trial conduct. This study within a trial (SWAT) aimed to examine if a PPI-informed participant information leaflet (PIL) could improve recruitment, retention, and quality of decision-making of an exercise-based rehabilitation trial (RESTORE II) for upper gastrointestinal (UGI) cancer survivors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This SWAT was conducted over two phases. Phase 1 applied qualitative methods to develop and refine a PPI-informed PIL. Phase 2 embedded a randomised controlled double-blind SWAT within the RESTORE II trial, comparing a standard PIL (PIL A) to the PPI-informed PIL (PIL B) in terms of recruitment, retention, and quality of decision-making (Decision Making Questionnaire [DMQ]).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Phase 1 recruited 16 PPI members (mean age 67.01 [9.28] years, mostly male [81.25%] and all UGI cancer survivors). Participants reviewed the standard PIL A and made suggestions for improvement, including revisions to the layout, title, text, provision of key information on the first page, and greater emphasis on the potential benefits of participation. This feedback was used to draft the alternative PIL B, which the Phase 1 participants reviewed and refined through minor changes to the appearance, text, and layout. In Phase 2, 307 potential RESTORE II trial participants were randomised to receive either PIL A (<i>n</i> = 154) or PIL B (<i>n</i> = 153). The overall recruitment rate was 28.7%. (PIL A 26.6% vs. PIL B 30.7%, OR 1.22 [95% CI 0.74 to 2.01, <i>p</i> = 0.43]), retention was 84.1% (PIL A 85.4% vs. PIL B 83.0%, OR 0.84 [95% CI 0.26 to 2.65, <i>p</i> = 0.760]). No significant difference in mean (SD) DMQ scores was observed: PIL A: 29.1 (4.4) vs. PIL B: 29.1 (5.1) (mean difference 0.03, 95% CI −1.64 to 1.69, <i>p</i> = 0.49).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>A PPI-informed PIL did not improve recruitment, retention, or decision-making for the RESTORE II trial.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Patients with UGI cancer informed the development of the interventional PIL B. Author P.B. provided input from the patient's perspective throughout the SWAT as a member of the Trial Steering Committee, providing oversight to the SWAT management, and contributed to analysis and the production of this manuscript.</p>\u0000 </secti","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70321","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244669","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":"Codesigning Solutions for Assistive Technology Service Provision in Queensland, Australia","authors":"Tammy Aplin,&nbsp;Louise Gustafsson,&nbsp;Christy Hogan,&nbsp;Michelle Owens,&nbsp; Hayden Boyd,&nbsp;Tenelle Hodson,&nbsp;Camila Shirota,&nbsp;Michelle Bissett","doi":"10.1111/hex.70322","DOIUrl":"https://doi.org/10.1111/hex.70322","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Assistive technology (AT) is an essential element of universal healthcare, with a lack of access to AT a worldwide problem. Collaboration between key stakeholders is essential to understand the provision challenges and to generate possible solutions. In this paper, we describe the involvement of a stakeholder group in a participatory action research process aimed to interrogate and generate solutions for the AT sector in one Australian state.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participatory action research with a stakeholder group (<i>n</i> = 14) comprising AT users, therapists experienced in providing AT services, representatives from injury or disability support schemes that manage AT provision, AT experts and researchers and representatives from statewide rehabilitation and allied organisations. Four action cycles were conducted to (1) develop the research design and methods, (2) conduct the research and interrogate the findings, (3) generate and prioritise solutions and (4) develop an action plan for the AT sector.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The stakeholder group influenced the design and conduct of a needs assessment (Action Cycles 1 and 2) and collaborated at a solution-building workshop to generate 10 recommended solutions (Action Cycle 3). In Action Cycle 4, AT users (<i>n</i> = 2) in consultation with AT experts (<i>n</i> = 2) led the finalisation of solutions and developed the following action plan recommendations: the development of an AT hub, AT mentor training and a training and credentialing system for AT advisors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Applying participatory action research, with leadership and collaboration from key stakeholders across the AT sector, can enrich processes and outcomes in AT-related policy research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Consultation</h3>\u0000 \u0000 <p>A stakeholder group was critical to the design and conduct of the needs assessment and was a leader in the collaborative solution generation and prioritisation process, and the development of an action plan.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70322","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144220198","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":"‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers","authors":"Leonie D. Schreck,&nbsp;Sophie Meyer,&nbsp;Eva S. L. Pedersen,&nbsp;Yin Ting Lam,&nbsp;Hansruedi Silberschmidt,&nbsp;Sara Bellu,&nbsp;Living with PCD patient advisory group,&nbsp;Sofía C. Zambrano,&nbsp;Claudia E. Kuehni,&nbsp;Myrofora Goutaki","doi":"10.1111/hex.70316","DOIUrl":"https://doi.org/10.1111/hex.70316","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Primary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experiences with fertility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used qualitative data from a questionnaire on fertility from <i>Living with PCD</i>, an international participatory study. In optional open-ended comment fields, participants shared their thoughts and experiences related to fertility. We adopted conventional content analysis and analysed the data inductively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of 384 survey respondents, 206 (54%) provided free-text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD-related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non-PCD-related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility-related concerns and psychological impact faced by many.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This participatory study was co-designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70316","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144214186","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}