Health Expectations最新文献

{"title":"Ergonomics of an In-Patient Hospitalization","authors":"Amy Louise Gilliland","doi":"10.1111/hex.70261","DOIUrl":"https://doi.org/10.1111/hex.70261","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 <p>This article documents inpatient work, including activities, number of nurses, shift changes and other staff encounters for the first time. In 2022, the researcher (patient) had a traumatic limb injury and began three 6–8 day stays in three different hospitals. Nursing care was provided by 37 different nurses and 23 certified nursing assistants in 50 different shifts over 21 days. There were 35 other unique encounters by other medical care staff. As an experienced qualitative researcher, the patient relied on field observation skills. Thirty-eight distinct inpatient activities were grouped into five general categories: Logistics, Arrangements, Self-care, Healing and Social Management. This article reveals that patients inside the hospital actively engage in various tasks to navigate and manage their health-related goals. These responsibilities may be overwhelming for the patient, who is without resources to solve their own problems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient Contribution</h3>\u0000 \u0000 <p>This paper is 100% from the patient's perspective and their original contribution.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70261","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143818360","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":"Defining Health Movements and Health Needs Across the Life Course: A Qualitative Study","authors":"Alyssa Yenyi Chan,&nbsp;Felicia Jia Hui Chan,&nbsp;Lucas Jia Rong Puah,&nbsp;Muhammad Bin Aman Azamuddin,&nbsp;Priyanka Rajendram,&nbsp;Weng Mooi Tan,&nbsp;Yoek Ling Yong,&nbsp;Zoe Jane-Lara Hildon","doi":"10.1111/hex.70228","DOIUrl":"https://doi.org/10.1111/hex.70228","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;In an effort to improve population health, communities are being enabled to take charge of their health through the Movements for Health (M4H) programme in Singapore. The present study seeks to understand what characterises a health movement and explores health narratives which resonate over the different life stages.&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 multi-component qualitative formative study was undertaken. Focus group discussions (FGDs, &lt;i&gt;n&lt;/i&gt; = 12) and one semi-structured interview (altogether involving &lt;i&gt;n&lt;/i&gt; = 52 individuals) were carried out with government and community implementation stakeholders, alongside go-along interviews (&lt;i&gt;n&lt;/i&gt; = 24, involving 11 volunteers, 13 programme participants) and e-diaries (&lt;i&gt;n&lt;/i&gt; = 37, with 22 programme participants and 15 volunteers).&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;Themes are reported in &lt;b&gt;bold,&lt;/b&gt; with subthemes in &lt;i&gt;italics&lt;/i&gt;. Health movement building was defined as an &lt;b&gt;evolving process&lt;/b&gt; marked by &lt;i&gt;co-creation, emotional investment&lt;/i&gt; and &lt;i&gt;framed by a shared understanding founded on explicit theory&lt;/i&gt;. Furthermore, health movements were characterised &lt;b&gt;as taking root in the community,&lt;/b&gt; needing &lt;i&gt;a shared ‘cause’ to&lt;/i&gt; be &lt;i&gt;self-sustaining&lt;/i&gt;. They should be able to &lt;i&gt;garner momentum and be replicable&lt;/i&gt;, and thus ultimately &lt;i&gt;far-reaching and inclusive of all walks of life&lt;/i&gt;. Themes cross-cutting life stages include &lt;b&gt;concerns about chronic illness&lt;/b&gt;, which are not limited to seniors. &lt;b&gt;Positive role modelling&lt;/b&gt; is crucial in &lt;i&gt;encouraging hesitant participants towards healthier behaviours&lt;/i&gt;. Additionally, the &lt;b&gt;importance of building supportive, emotional connections with implementers&lt;/b&gt; was emphasised. Priority areas for changing health behaviours and informing health literacy planning across various life stages have also been identified. For youths, &lt;b&gt;mental health&lt;/b&gt; struggles, such as &lt;i&gt;mood regulation issues,&lt;/i&gt; are prevalent and often exacerbated by &lt;i&gt;parental invalidation&lt;/i&gt;. Adults tend to deprioritize &lt;b&gt;social health&lt;/b&gt; due to responsibilities like breadwinning and childminding, &lt;i&gt;coping through social connections forged among programme participants&lt;/i&gt;. Seniors expressed trepidation regarding their &lt;b&gt;physical health&lt;/b&gt;, fearing a &lt;i&gt;loss of independence&lt;/i&gt; and verbalising how &lt;i&gt;limited mobility affects their ability to exercise and socialise&lt;/i&gt;.&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 present study has provided insights into the early phases of the n","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70228","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143809689","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":"Key Outcomes for a Vocational Rehabilitation Intervention for People With Multiple Sclerosis: A Nominal Group Technique Study","authors":"Blanca De Dios Perez,&nbsp;Caolan Senior,&nbsp;Roshan das Nair,&nbsp;Denise Kendrick,&nbsp;Nikos Evangelou,&nbsp;Ian Newsome,&nbsp;Kate Radford","doi":"10.1111/hex.70265","DOIUrl":"https://doi.org/10.1111/hex.70265","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Job retention vocational rehabilitation (VR) interventions for people with multiple sclerosis (MS) can positively impact a person's independence and directly influence health and employment outcomes. However, evaluating the effectiveness of VR interventions can be challenging due to their highly individualised nature and the diverse range of potential health and employment outcomes that may be impacted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To identify the most important outcomes of a job retention VR intervention from the perspective of people with MS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>A nominal group technique (NGT) was conducted with people with MS using Microsoft Teams and Microsoft Forms. The study involved completing a demographic questionnaire, being introduced to VR, silently generating ideas, round-robin discussions, ranking outcomes and reaching a consensus. NGT data were analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We conducted two NGTs involving 10 participants with MS. Nine outcomes were identified and ranked based on priority, relating to four themes: (1) Employer support and collaboration; (2) Empowerment; (3) Symptom management and progression and (4) Professional well-being and performance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Improvements in employer support and symptom management were seen as key outcomes for VR interventions that could eventually lead to enhanced work performance and job retention for people with MS. Future research should explore how feasible it is to collect these outcomes to ascertain the impact of VR on employment over time. Due to the complexity of the outcomes identified, there may be a need to develop new outcome measures with improved validity and sensitivity to these interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This study is part of a larger project co-developed with three people MS. A lead patient and public involvement representative and lay co-author reviewed the study topic guide to improve clarity and study focus and supported the group discussions and data analysis with input from the lead researcher.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70265","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143818725","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":"Rethinking ‘Recovery’: A Comparative Qualitative Analysis of Experiences of Intensive Care With COVID and Long Covid in the United Kingdom","authors":"Alice MacLean,&nbsp;Annelieke Driessen,&nbsp;Lisa Hinton,&nbsp;Sarah Nettleton,&nbsp;Cervantee Wild,&nbsp;Eilidh Anderson,&nbsp;Ashley Brown,&nbsp;Pat Hoddinott,&nbsp;Callum O'Dwyer,&nbsp;Sue Ziebland,&nbsp;Kate Hunt","doi":"10.1111/hex.70253","DOIUrl":"https://doi.org/10.1111/hex.70253","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;Interpretations of ‘recovery’ from illness are complex and influenced by many factors, not least patient expectations and experiences. This paper examines meanings of ‘recovery’, and how it is strived towards, drawing on the example of COVID-19 infection.&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;Drawing on qualitative interviews (&lt;i&gt;n&lt;/i&gt; = 93) conducted in the UK between February 2021 and July 2022, we compare adults' accounts of being admitted to an Intensive Care Unit (ICU) with COVID-19 to accounts of being ill with Long COVID, defined as ongoing symptoms for at least 12 weeks postinfection. We conducted a multi-stage comparative analysis using Nvivo to organise and code the data.&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;We identified similarities and differences in participants' descriptions of their ‘worlds of illness’. For both groups, perceptions of recovery were shaped by the novel, unknown nature of COVID-19. Participants questioned the achievability of full restoration of prior states of health, highlighted the heterogeneity of ‘recovery trajectories’ and described the hard physical and emotional work of adjusting to changed selves. Themes that revealed differences in ‘worlds of illness’ described included the different baselines, waymarkers, and pathways of illness experiences. Differences in other people's responses to their illness were also evident. For ICU participants, hospitalisation, and especially ICU admission, conferred legitimate patient status and authenticity to their symptoms. Family, friends and healthcare professionals acknowledged their illness, celebrated their survival, and granted them latitude to recover. For Long Covid participants, their patient status often lacked comparable authenticity in others' eyes. They reported encountering a lack of recognition and understanding of their ongoing need to recover.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study highlights how the meanings of illness ascribed by others can influence how recovery is experienced. Our findings highlight the importance of ensuring people are made to feel their illness experiences are legitimate, regardless of hospitalisation status, formal diagnosis or lack of medical knowledge and pathways. They also indicate the value of emphasising the different permutations, and lack of linearity, that recovery can take. This may help to help to guard against a lack of understanding for experiences of recovery which do not meet idealised notions.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70253","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143801539","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":"Family Interviews Improve Health Service Recommendations in Mortality Review Process: A Mixed-Methods Assessment","authors":"Catherine Kothari,&nbsp;Fernando Ospina,&nbsp;Nia Evans,&nbsp;Cynthia Bane,&nbsp;Joi Presberry Dixon,&nbsp;Vaishali Patil,&nbsp;Ruth Butters,&nbsp;Rosemary Fournier,&nbsp;Susanna C. Joy,&nbsp;Brenda O'Rourke,&nbsp;Josephine Woods,&nbsp;Debra Lenz,&nbsp;Aaron L. Davies","doi":"10.1111/hex.70233","DOIUrl":"https://doi.org/10.1111/hex.70233","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;Within the United States, although there is strong motivation for incorporating family interviews into Fetal Infant Mortality Reviews (FIMR) and important potential for expanding it to other types of reviews, there is limited evidence that family interviews make a difference in review team outcomes.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study aims to assess the impact of FIMR family interviews identifying health service gaps and generating actionable improvements.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Mixed methods design with quantitative case-control analysis and qualitative semi-structured interviews. Quantitative data collection was secondary analysis of FIMR administrative records, comparing outcomes with and without family interviews using Generalized Estimating Equation (GEE) and descriptive analysis of annual FIMR team evaluation responses. Qualitative data collection included audio-taping, transcribing and consensus coding of semi-structured interviews.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The quantitative setting was Kalamazoo County, Michigan, FIMR reviews from 2015 to 2023, whereas the qualitative setting was virtual. Quantitative sample was the full population of completed FIMR case reviews (&lt;i&gt;N&lt;/i&gt; = 158), and the 15 FIMR team case reviewers completing the 2023 annual evaluation. The qualitative sample was a purposive sample of 28 FIMR administrators across the United States.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main Outcome Measures&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Quantitative outcomes were review-identified contributing stressors and subsequent recommendations generated in the case review process. Qualitative outcomes were thematic experiences of family interview implementation and impact within mortality review process.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The 53 cases (34%) with family interviews were similar to the 105 (66%) non-interview cases regarding multipleperinatal characteristics and were different regarding death type and manner. Controlling for these differences, GEE analysis found that family interviews were associated with increased identification of stressors, especially medical and socioeconomic, with a 2.6 increase in the number of stressors identified (aOR = 2.6, 95% CI: 1.5–4.7, &lt;i&gt;p&lt;/i&gt; &lt; 0.001). Family interviews were associated with a 40% in","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70233","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143801395","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":"Navigating Power Imbalances and Stigma in Mental Healthcare. Patient-Reported Barriers and Facilitators to Participation in Shared Decision-Making in Mental Health Care, a Qualitative Meta-Summary","authors":"Lien Mertens,&nbsp;Joris Vandenberghe,&nbsp;Geertruida Bekkering,&nbsp;Karin Hannes,&nbsp;Nicolas Delvaux,&nbsp;Pieter Van Bostraeten,&nbsp;Jasmien Jaeken,&nbsp;Bert Aertgeerts,&nbsp;Mieke Vermandere","doi":"10.1111/hex.70239","DOIUrl":"https://doi.org/10.1111/hex.70239","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The use of shared decision-making (SDM) in mental healthcare has been viewed as at least as important as its use in non-mental healthcare settings, but it still does not routinely take place in this setting. To further explore SDM processes with people with lived experience, we provide a qualitative meta-summary on patient-reported barriers and facilitators to participation in SDM within the context of mental healthcare.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Within the set of selected studies for a larger qualitative meta-summary, using five databases, we selected the studies that had surveyed patients with mental illness for further analysis in this paper. Search terms were based on the concepts: ‘decision making’, ‘patient participation’, ‘patient perceptions’ and ‘study design’ of patient reporting, including patient surveys, interviews and focus groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of the 90 studies that had been selected for the larger review, we selected 13 articles concerning mental illness for more detailed analysis in this review. In total, we identified 29 different influencing factors and we found 6 major barriers: ‘Lack of choice’, ‘Not being respected as a person’, ‘Feeling stigma from physician’, ‘Disease burden’, ‘Power imbalance’ and ‘Low self-efficacy to participate’. ‘Clear information provision about options’, ‘Being respected as a person, being taken into account’, ‘Good physician-patient relationship’ and ‘Belief in the importance of one's own role’ were the main facilitators.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Stigma and self-stigma still seem to persist in mental healthcare and continue to suppress patients' self-efficacy to participate in SDM in this setting. There is much discussion of inclusion and diversity worldwide, and these themes are just as topical for patients with mental health problems. Further work seems necessary to eradicate all stigma and self-stigma in this setting when striving for care that could be ‘as shared as possible’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>The authors wish to thank Mr. Walter Geuens, a person with lived experience in mental healthcare, for his careful reading and thorough feedback on the final paper.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70239","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143787262","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":"Lived Experience Participation in Suicide Prevention Activities in Australia, a Scoping Review","authors":"Hayley Purdon,&nbsp;Tania Pearce,&nbsp;Bess Jackson,&nbsp;Sarah Wayland,&nbsp;Myfanwy Maple","doi":"10.1111/hex.70241","DOIUrl":"https://doi.org/10.1111/hex.70241","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Lived experience inclusion is considered best practice in suicide prevention activities. Despite this, research remains limited exploring how individuals with lived experience actively engage in suicide research and prevention activities. The current scoping review aimed to map and summarise the existing literature describing the ‘how’ of lived experience participation in Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A scoping review according to the methodology of Arksey and O'Malley (2005) was undertaken with descriptive (e.g., study aims and methodology) and descriptive analytic data (such as key definitions and participation descriptors) being extracted from included studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 42 studies met the inclusion criteria and were published between 2016 and 2023. There were many gaps in the data extracted, with participation descriptors and definitions often not reported in the literature. The included studies lacked clear and consistent definitions and practices when involving people with lived experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Current processes for reporting experiences of lived experience participation in suicide prevention lack standardisation within peer-reviewed publications. This review notes that there are gaps in the literature; however, the evidence base is growing for research that reports on suicide prevention research and activities that involve people with lived experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This study was created and undertaken by a PhD candidate with lived experience of thoughts of suicide, suicide attempt and caring for a loved one through suicide. A further team member has lived experience of being a suicide attempt survivor, continued thoughts of suicide and carer of family with suicidal thoughts. The study was informed by a Community Advisory Committee, of which four members have lived experience of suicide, with the remaining two having lived experience in areas where inclusion is paramount such as disability and suicide research. Ethics approval was not required for the participation of the Community Advisory Committee as they were providing advice only on the research conduct.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70241","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143778294","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":"Empowering Recovery: A Co-Designed Intervention to Transform Care for Operable Lung Cancer","authors":"Georgina A. Whish-Wilson,&nbsp;Lara Edbrooke,&nbsp;Vinicius Cavalheri,&nbsp;Zoe T. Calulo Rivera,&nbsp;Madeline Cavallaro,&nbsp;Daniel R. Seller,&nbsp;Catherine L. Granger,&nbsp;Selina M. Parry","doi":"10.1111/hex.70196","DOIUrl":"https://doi.org/10.1111/hex.70196","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;Patients undergoing surgery for lung cancer experience significant symptom burden and physical impairments. Exercise rehabilitation programmes have been shown to improve symptoms and aid recovery, however, implementation into routine practice has proven challenging.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To develop a robust understanding of the key design requirements of an exercise-based pre- and post-operative rehabilitation prototype intervention designed to support patients with operable lung cancer prepare for and recover from thoracic surgery, and co-design an acceptable intervention prototype with key stakeholders.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design, Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;An experience-based co-design (EBCD) study involving patients, caregivers, clinicians, consumer advocates and researchers from across Australia. Two rounds of EBCD workshops were held between November 2023 and May 2024. Workshops were underpinned by the COM-B Model and Theoretical Domains Framework. Qualitative data were thematically analysed by two independent researchers. Identified barriers and facilitators were mapped to the Behaviour Change Wheel, and used to develop the final intervention prototype, which was presented using the Template for Intervention Description and Replication (TIDieR) guide.&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;Eleven patients (55% female, mean age 66.4 (±9.3) years), one caregiver, and 16 professionals (physiotherapists, nurses, respiratory physicians, a thoracic surgeon, consumer advocates and researchers) participated. Retention between workshop rounds was high (86%). Nineteen major themes were developed, including unmet education needs; the link between mental health and recovery; and the influence of unexpected, persistent symptoms and functional decline. Core intervention principles included flexibility, individualisation and continuity. Essential components included screening/assessment, education, exercise, behaviour change, and mental health support. The intervention prototype was refined in the second workshop round.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This EBCD study successfully identified key experiences and barriers in preparing for and recovering from lung cancer surgery and engaged stakeholders in complex intervention design, culminating in the development of a flexible, multi-modal pre- and post-operative rehabilitation programme prototype. Futu","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70196","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143778295","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":"Participatory Research in Clinical Studies: An Innovative Approach to Co-creating Nutritional and Physical Activity Recommendations for Older Adults With Sarcopenia (FOOP-Sarc Project)","authors":"Maria Besora-Moreno,&nbsp;Cristina Sepúlveda,&nbsp;Judit Queral,&nbsp;Claudia Jiménez-ten Hoevel,&nbsp;Anna Pedret,&nbsp;Lucia Tarro,&nbsp;Rosa M. Valls,&nbsp;Rosa Solà,&nbsp;Elisabet Llauradó","doi":"10.1111/hex.70187","DOIUrl":"https://doi.org/10.1111/hex.70187","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;Participating in co-creation processes can improve the knowledge, satisfaction and healthcare outcomes of volunteers. However, this methodology is still underused in nutritional clinical studies.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study aimed to use participatory research as an innovative approach to co-creating nutritional and physical activity (PA) recommendations for the FOOP-Sarc project and to assess their usability and volunteers' satisfaction and engagement experience (SEE) during the co-creation process.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The co-creation process was based on four stages: (s1) co-ideation, (s2) co-design, (s3) co-implementation and (s4) co-evaluation (Ref.: NCT05485402).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Participants&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Thirteen volunteers with sarcopenia were included (stages 1–2 [&lt;i&gt;n&lt;/i&gt; = 7], stage 3 [&lt;i&gt;n&lt;/i&gt; = 3 intervention, &lt;i&gt;n&lt;/i&gt; = 3 control] and stage 4 [&lt;i&gt;n&lt;/i&gt; = 13]).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Measures&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The co-ideation (s1) and co-design (s2) stages focused on designing recommendations adapted to the volunteers' preferences; the co-implementation (s3) stage included the implementation and comparison of the co-created or standard recommendations for 3 weeks to test the recommendations' acceptance; and the co-evaluation (s4) stage focused on usability, SEE, and adherence.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The volunteers co-created recommendations for improving sarcopenia according to the barriers identified related to diet and PA. The recommendations' usability and the SEE of volunteers were high in all cases.&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;The participatory research approach used in this nutritional intervention study, demonstrates a high usability of the co-created recommendations for sarcopenia and high SEE of the volunteers, particularly in the volunteers who participated in co-ideation (s1) and co-design (s2), the most key stages of the co-creation process.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The volunteers in this study participated in the co-creation o","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70187","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143778336","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":"Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review","authors":"Felix Bühler,&nbsp;Jennifer Geyer,&nbsp;Gabriele Meyer,&nbsp;Anja Bieber","doi":"10.1111/hex.70250","DOIUrl":"https://doi.org/10.1111/hex.70250","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;Patient and public involvement (PPI) is considered part of best-practice for health care delivery, research and policy. However, people with dementia are frequently excluded from PPI initiatives. While recent studies have investigated PPI of people with dementia in research, little is known about their involvement at the macro-level of care, that is, in health policy and guideline development. This scoping review maps the evidence on PPI of people with dementia at the macro-level of care, focusing on the methods, outcomes and mechanisms of involvement.&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;We systematically searched MEDLINE via PubMed, CINAHL, the Cochrane Library and GeroLit. Additionally, we performed forward and backward citation searching, manually tracked individual references, searched abstract books and yearbooks, and contacted authors of included reports to seek additional references. We analysed each method's mechanisms of involvement to assess whether measures were taken to maximise effective information transfer.&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;We included 43 reports and identified 35 involvement methods, which we structured into six categories: ‘focus groups and interviews’, ‘surveys and questionnaires’, ‘public events’, ‘meetings with decision-makers’, ‘serving as members of working groups’, and ‘multiple-step methods’. Most of the involvement took the form of consultations during the early stages of policy or guideline development. All involvement methods required verbal communication skills, almost all of the participants had mild dementia. We found that most reports did not clearly state the involvement outcomes. While a majority of methods had some facilitation in place to elicit information from participating people with dementia, only nine methods used a structured aggregation to synthesise participants' contributions into a joint statement.&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;We found limited evidence of dementia-adapted involvement. Future research might focus on exploring the mechanisms of involvement to adapt methods to specific target groups, such as people with impaired verbal communication or advanced dementia. We recommend using existing guidance to report PPI initiatives, as the reporting was often incomplete, which limits reproducibility.&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;We discussed both our study protocol a","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 2","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70250","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143770278","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}