Health Expectations最新文献

{"title":"HIV Pre-Exposure Prophylaxis (PrEP) Users' Experiences of PrEP Access, Sexual Behaviour, and Well-Being During the COVID-19 Pandemic: A Welsh Qualitative Study","authors":"Zahraa Khammas,&nbsp;David Gillespie,&nbsp;Adam Dale Newman Williams,&nbsp;Jane Nicholls,&nbsp;Fiona Wood","doi":"10.1111/hex.70064","DOIUrl":"https://doi.org/10.1111/hex.70064","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>HIV Pre-Exposure Prophylaxis (PrEP) has been available in Wales since 2017. The coronavirus disease (COVID-19) pandemic impacted UK sexual health services, leading to a reduction in service provision. There is a lack of research on the experiences of PrEP users during this time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>We aimed to explore the experiences of PrEP users in Wales following the introduction of COVID-19 pandemic measures.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a secondary data analysis of two prior interview studies (DO-PrEP and UPrEP). Data collection was undertaken between May 2020 and February 2021 using remote interviewing. Semi-structured interviews were conducted. Participants were ≥18 years of age, residents of Wales, current or previous PrEP users, and men who have sex with men (MSM). Reflexive thematic analysis was conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 32 interviews were included in the analysis. Themes include the following: (1) PrEP use during COVID-19, (2) sexual behaviour and relationship changes following COVID-19 restrictions, (3) NHS service provision during the COVID-19 pandemic, and (4) wider contextual effects of the pandemic. Participants reported a change in PrEP use (pausing or switching to event-based PrEP). Participants reported reduced access to clinics and appointments. Support for changing to event-based PrEP was varied. Social isolation resulted in varied responses to lockdown rules, especially in later lockdowns.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study provides patient perspectives on the challenges the COVID-19 pandemic posed to PrEP use and access. It offers insights into the broader support needs around PrEP use when an individual's circumstances change. Flexible models of PrEP provision, which can be adapted to the patient's needs, will be essential as PrEP delivery extends into the wider community.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>Both the DO-PrEP and UPrEP studies received input from various stakeholders in the design of the topic guides for the study; these included public lay members, PrEP users, PrEP providers, and individuals involved with HIV advocacy and policy.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142447516","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":"Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project","authors":"Bróna Nic Giolla Easpaig,&nbsp;Bronwyn Newman,&nbsp;Judith Johnson,&nbsp;Ursula M. Sansom-Daly,&nbsp;Lucy Jones,&nbsp;Lukas Hofstätter,&nbsp;Eden G. Robertson,&nbsp;Reema Harrison","doi":"10.1111/hex.70061","DOIUrl":"https://doi.org/10.1111/hex.70061","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;Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill-prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence-based intervention to be suitable for carers of people with cancer.&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;This study used an exploratory, qualitative design consisting of experienced-based co-design and an in-depth stakeholder engagement strategy. An existing evidence-based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co-design workshops with carers and healthcare professionals (&lt;i&gt;n&lt;/i&gt; = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (&lt;i&gt;n&lt;/i&gt; = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed.&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;Major programme developments were guided by three themes that emerged from the co-design workshops: ‘creating value for carers’, ‘multiple contributors to carer distress’ and ‘the need for flexible implementation’. Analysis of the stakeholder consultation data showed that the themes of ‘diversity in carer journeys’ and ‘creating impact for carers’ were key to further tailoring the programme for applicability to practice. An adapted programme called ‘iCanSupport’ resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances.&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;Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co-design provided a user-centric approach to adapt an existing evidence-based programme. Programme evaluation is required to determine the effectiveness of the co-designed approach in improving carer preparedness among a range of cohorts.&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;Carers and consumers with lived experience and others involved in supporting consumers made valuable co","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70061","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142447515","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":"Factors That Influence Access to Medical Assistance in Dying Services: An Integrative Review","authors":"Jayne Hewitt,&nbsp;Michael Wilson,&nbsp;Ann Bonner,&nbsp;Melissa J. Bloomer","doi":"10.1111/hex.70058","DOIUrl":"https://doi.org/10.1111/hex.70058","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 nearly all jurisdictions where it is permitted, Medical Assistance in Dying is situated in a healthcare system. Currently, limited evidence demonstrates how supply and demand factors influence access to Medical Assistance in Dying.&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;The aim of this study is to synthesise empirical research from jurisdictions where Medical Assistance in Dying is legal to identify how supply and demand factors influence access for eligible adults.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;An integrative review was conducted. CINAHL Complete, PubMed, ProQuest, PsycINFO and Embase databases were systematically searched for studies published between January 1998 and January 2024. Records were independently assessed against inclusion and exclusion criteria. Additional studies were identified by forward and backward citation searching. All studies were assessed for quality. Findings were analysed deductively using an established conceptual framework, and a secondary narrative synthesis was undertaken.&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;Fifty-eight studies met the inclusion criteria. Most studies (&lt;i&gt;n&lt;/i&gt; = 32) reported results related to the supply side, 16 reported on the demand side and 10 reported on both supply and demand dimensions of access. Studies about supply showed that health service policies may obstruct access to Medical Assistance in Dying. For healthcare professionals, the practice entails an additional workload and can create tensions with colleagues. Studies of the demand for Medical Assistance in Dying focused on supporting time-critical decisions, adequate planning and caregiver support.&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;Access to Medical Assistance in Dying requires the participation of health services and healthcare professionals but is hindered by policies that obstruct access and direct financial and indirect emotional labour costs. Innovative and inclusive models to promote high-quality, compassionate care at the end of life and access to Medical Assistance in Dying should be considered.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Patients, caregivers and service users were involved in many of the studies included in this review, and their experiences and perspectives contributed to the analysis and synthe","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70058","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142447514","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":"How Readable Is the Information the United Kingdom's Statutory Health and Social Care Professional Regulators Provide for the Public to Engage With Fitness to Practise Processes?","authors":"Sharif Haider,&nbsp;Louise M. Wallace","doi":"10.1111/hex.70067","DOIUrl":"https://doi.org/10.1111/hex.70067","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The public are an important source of notifications and evidence for the investigation of concerns by regulators of professionals. The website is an important source of information for the public, but the complexity of information presented to engage with the public is unknown.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>This study explored the readability of information provided for the public to engage with fitness to practise processes by examining the websites of the 13 UK statutory health and social care professional regulators.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Six readability algorithms were utilised to calculate the readability scores of 180 general and 8 easy-read documents published for the 15 sites of the United Kingdom's 13 health and social care statutory professional regulatory bodies. These tests were the Flesch Kincaid Reading Ease, the Flesch Kincaid Grade Level, the Gunning Fog Score, the Simple Measure of Gobbledygook (SMOG) Index, the Coleman Liau Index and the Automated Readability Index (ARI).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>All the fitness to practise documents analysed in this study are written at a level too difficult for most of the general population to read, except one easy-read document. There was also considerable variation in readability across resources for the same regulator, which could be confusing. Regulatory bodies risk excluding a large proportion of UK adults who may want to engage with professional regulatory proceedings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This is the first comparative analysis of readability conducted independent of the regulators of the fitness to practise website documents of health and social care regulators. The public are a key source of evidence in regulatory proceedings. Regulators could improve public engagement by addressing the complexity of language used.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contribution</h3>\u0000 \u0000 <p>Our advisory group of people with lived experience of involvement as members of the public in fitness to practise proceedings discussed the findings and contributed to the recommendations.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142439085","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":"‘You're Just Thinking About Going Home’: Exploring Person-Centred Medication Communication With Older Patients at Hospital Discharge","authors":"Henrik Cam,&nbsp;Kristin Franzon,&nbsp;Sofia Kälvemark Sporrong,&nbsp;Thomas Gerardus Hendrik Kempen,&nbsp;Cecilia Bernsten,&nbsp;Elisabet I. Nielsen,&nbsp;Lovisa Gustavsson,&nbsp;Elnaz Moosavi,&nbsp;Stina Lindmark,&nbsp;Ulf Ehlin,&nbsp;Maria Sjölander,&nbsp;Karl-Johan Lindner,&nbsp;Ulrika Gillespie","doi":"10.1111/hex.70065","DOIUrl":"https://doi.org/10.1111/hex.70065","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The hospital discharge process poses significant safety risks for older patients due to complexities in communication and coordination among stakeholders, leading to potential drug-related problems post-discharge. Adopting a person-centred care (PCC) approach in medication communication by healthcare professionals (HCPs) is crucial to ensure positive health outcomes. This study aimed to explore the practice of PCC in medication communication between older patients and HCPs during the hospital discharge process.&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 conducted a qualitative study using non-participatory direct observations of patient–HCP consultations during hospital discharge, followed by semi-structured interviews with observed patients and, when applicable, their informal caregivers. Data collection occurred from October 2020 to May 2021 at two Swedish hospitals. We gathered data using an observational form and audio-recorded all consultations and interviews. The data were analysed thematically using the systematic text condensation method.&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;Twenty patients were included (median age: 81 years [range: 65–94]; 9 female) in observations and 13 of them participated in interviews. Two patients were accompanied by an informal caregiver during the interviews. Three main themes were identified: (1) &lt;i&gt;The impact of traditional authoritarian structures&lt;/i&gt;, depicts power dynamics between patients and their HCPs, showing how traditional structures influence the practice of PCC in medication communication during hospital discharge; (2) &lt;i&gt;Consultation timing and mode not on patients' terms&lt;/i&gt;, describes suboptimal times and settings for consultations, along with the use of complex language that hinders effective communication; and (3) &lt;i&gt;Discrepancy in expectations of self-care ability&lt;/i&gt;, illustrates a mismatch between the self-care guidance provided by HCPs during hospital discharge and the actual needs and preferences of patients and informal caregivers.&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;Medication communication between older patients and HCPs during hospital discharge is frequently inconsistent with the practice of PCC. Not only must HCPs improve their communication strategies, but patients and their informal caregivers should also be better prepared for discharge communication and encouraged to participate in their care. This involvement would give them relevant knowledge and tailor communication to their individual needs, preventing problems","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70065","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142435491","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":"Healthy from the Start: Co-Designing Sleep, Nutrition and Physical Activity Resources for Young Shiftworkers—Novel Implementation and Evaluation","authors":"Alexandra E. Shriane,&nbsp;Sally A. Ferguson,&nbsp;Gabrielle Rigney,&nbsp;Charlotte C. Gupta,&nbsp;Tracy Kolbe-Alexander,&nbsp;Madeline Sprajcer,&nbsp;Cassie Hilditch,&nbsp;Robert Stanton,&nbsp;Matthew J. W. Thomas,&nbsp;Jessica L. Paterson,&nbsp;Jamie Marino,&nbsp;Grace E. Vincent","doi":"10.1111/hex.70063","DOIUrl":"https://doi.org/10.1111/hex.70063","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;The increasing prevalence of shiftwork among young adults poses significant health risks, primarily due to its disruptive effects on sleep, nutrition and physical activity. Addressing these risks necessitates the development of tailored, evidence-based resources to support these key health behaviours. Participatory research approaches, engaging those with relevant lived experience (i.e., co-design) are a novel and effective approach in developing these resources. As such, the aim of the present study was to explore whether sleep, nutrition and physical activity resources for young shiftworkers could be developed using participatory, co-design approaches and how co-designers would rate both the approaches used and the resulting resources.&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 participatory approach engaged co-designers (young, experienced or previous shiftworkers; workplace health and safety specialists; science communicators and academic experts) to complete 2–3 online questionnaires and participate in 1–2 online workshops, to co-design sleep, nutrition and physical activity resources for young shiftworkers. Following resource development, co-designers assessed both the participatory approach and the resulting resources, through an online questionnaire, which included the Public and Patient Engagement Evaluation Tool (PPEET).&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;Co-designers (&lt;i&gt;n&lt;/i&gt; = 48) participated in the development of sleep, nutrition and physical activity resources for young shiftworkers. Co-designers evaluated the participatory approach positively, with a mean rating across all PPEET items of 4.7 (±0.2) on a 5-point Likert scale. Co-designers also provided positive ratings for the resources, with the majority (91.7%) either &lt;i&gt;agreeing&lt;/i&gt; or &lt;i&gt;strongly agreeing&lt;/i&gt; that they were user-friendly, valuable and informative for young shiftworkers and would serve as a credible source of health information.&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;By adopting a novel participatory approach, we successfully co-designed sleep, nutrition and physical activity resources for young shiftworkers. Participatory approaches, including co-design, should be considered when developing health interventions for shiftworkers, given the value of embedding lived experience to address their unique lifestyle challenges.&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;Co-desig","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70063","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142435403","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":"Reflections on an Evidence Review Process to Inform the Co-Design of a Toolkit for Supporting End-of-Life Care Planning With People With Intellectual Disabilities","authors":"Elizabeth Tilley,&nbsp;Lorna Rouse,&nbsp;Irene Tuffrey-Wijne,&nbsp;Rebecca Anderson-Kittow","doi":"10.1111/hex.70062","DOIUrl":"https://doi.org/10.1111/hex.70062","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;There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities. To inform the co-design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice.&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;Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk-based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third-sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co-design team.&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 evidence review played a critical role in the co-design of a new toolkit of end-of-life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes.&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 survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co-design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co-design activities in health and care research, particularly for studies involving people with intellectual disabilities.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co-design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70062","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142435402","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":"Exploring the Experiences, Perceptions and Social Dynamics of Electronic Cigarette Users: A Qualitative Study","authors":"Ersan Gürsoy,&nbsp;Rıdvan Kaya","doi":"10.1111/hex.70066","DOIUrl":"https://doi.org/10.1111/hex.70066","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;Electronic cigarettes, or e-cigarettes, are rapidly gaining popularity throughout the globe as safer alternatives to traditional cigarette smoking. There are significant public health concerns due to the uncertainty of long-term health consequences. This study aims to examine the experiences, attitudes and social dynamics of e-cigarette users to provide guidance for public health policies and interventions.&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;In this qualitative descriptive study, semi-structured interviews were conducted. Fifteen e-cigarette users were recruited using a snowball sampling strategy, where initial participants referred other suitable users. All participants had at least 6 months of regular e-cigarette use. Data were collected through face-to-face interviews with open-ended questions. The interviews were transcribed verbatim and reviewed by the researchers. This review identified four main themes and eight sub-themes.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The four main themes identified as a result of the analysis are as follows: (1) initiation and usage experiences; (2) perceptions of health effects; (3) social and environmental factors and (4) addiction and future plans. Participants primarily began using e-cigarettes out of curiosity, due to the appealing fragrance and the belief that they were less harmful than traditional cigarettes. Usage patterns varied among participants, with some reporting minimal cravings in the early morning hours. Opinions on the long-term health effects of e-cigarettes were diverse, with many participants acknowledging uncertainty. Peers and family members perceived e-cigarettes as more socially acceptable than traditional smoking, resulting in fewer negative reactions. Finally, participants' levels of addiction and intentions to quit varied, with some expressing a desire to reduce or cease usage due to health concerns.&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 findings of this study indicate that the adoption of e-cigarettes is influenced by a confluence of factors, including curiosity, the perception of reduced damage in comparison to conventional cigarettes and social acceptance. Notwithstanding these claimed advantages, users have a diverse array of beliefs and understandings concerning the enduring health consequences of e-cigarettes. The presence of varying levels of addiction and the corresponding aspirations to cease the behaviour highlight the necessity for focused public health interventions.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142435415","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":"Between Public Guidelines for User Involvement and Ideals About Free Research: Using Collaborative Autoethnography to Explore Researcher Experiences From a User Involvement Process","authors":"Anne Werner,&nbsp;Ingrid Ruud Knutsen,&nbsp;Anne-Kari Johannessen","doi":"10.1111/hex.70055","DOIUrl":"10.1111/hex.70055","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background and Aim&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;User participation is a prerequisite for receiving research funding in healthcare in Norway. Despite many positive benefits, studies report challenges from users' and researchers' perspectives. Limited knowledge exists concerning researchers' experiences in scenarios where the users are professionals within healthcare and research. The aim of this retrospective study was to explore and reflect on personal experiences as researchers from a process of planning and developing research questions for a PhD project, following the James Lind Alliance guidelines, which were a requirement for funding. We focused on how the process of collaboration with a specific group of users influenced the researchers' sense of selves.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design and Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We used a qualitative design based on collaborative autoethnography, exploring personal experiences from a sociocultural point of view. Two of the three researchers in the team recollected their experiences from the user involvement process while applying the James Lind Alliance guidelines. We used different data sources to develop two autoethnographic narratives. The narratives were analysed using thematic analysis.&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 autoethnographic narratives demonstrate the complexity of user involvement from the researchers' perspectives. We identified four themes in the analysis: intrinsic and extrinsic motivation, competing paradigms, hierarchy and dual roles. The accounts illustrated the researchers' ambivalence within the process, indicating that they feared a loss of control over the direction of the research project. The narratives visualised a struggle to appear as credible researchers, illustrating how the involvement of a specific group of users and adherence to a specific guideline for user involvement influenced the researchers' experiences of their roles and identities in the collaboration.&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 results point to the relevance of the sociocultural backdrop; researchers might become frontline providers of policy implementation in research, balancing tensions between regulatory constraints, user involvement and researchers' professional identity and research ideals, when a specific, detailed procedure for user involvement is required.&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;Two user panels comprising participants fro","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11462430/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142395455","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":"Towards a New Integrated Model for Taking Into Account the Experiential Knowledge of People With Chronic Diseases, Integrating Mediation, Therapeutic Education and Partnership: The Expanded Chronic Care Patient–Professional Partnership Model","authors":"Marie-Pascale Pomey,&nbsp;Béatrice Schaad,&nbsp;Aline Lasserre-Moutet,&nbsp;Philip Böhme,&nbsp;Mathieu Jackson","doi":"10.1111/hex.70054","DOIUrl":"10.1111/hex.70054","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;The Chronic Care Model (CCM), the Expanded Chronic Care Model (ECCM) and the eHealth Enhanced Chronic Care Model (eCCM) focus on how healthcare teams and eHealth support can offer effective care and relevant solutions for patients facing chronic care conditions. However, they do not consider how patients can help these teams in their work, nor do they promote ways in which patients can help themselves. However, in the last decade, three different models have emerged that can complete our capacity to design and deliver integrated care for people with chronic diseases. In this article, we propose a revised version of the model that integrates the patient perspective and patients' experience-based knowledge. It integrates three different ways of engaging patients that complement the other patient engagement point of view: the experience of care and mediation in healthcare, therapeutic patient education and patient learning pathways, as well as patient–professional partnership.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methodology&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;For each of the three models, we conducted a review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct and government reports on patient engagement and partnership with their healthcare providers, to integrate the different components of these models into the ECCM and eCCM. The goal is to create a model that better takes into account the experiential knowledge of patients and citizens throughout its different dimensions.&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 129 papers based on their framework, design, sample, measures and fit with patient engagement and chronic illness and added our own research when relevant. Integrating the three models provides an opportunity to amplify the role played by the patient perspective in the management of chronic disease. The Expanded Chronic Care Patient–Professional Partnership Model (E2C3PM) is intended to rebalance power relations between healthcare professionals and patients (and their caregivers). This new model is based on recognizing patients' experiential knowledge and their roles as caregivers and as full members of the care team. Integrating patient empowerment into the E2C3PM underscores the importance of coproduction care with patients at the clinical, organizational and system levels within a supportive environment.&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;Applying this new model should make it possible to better take into account the complexity of chronic diseases, improving the integ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382522","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}