Health Expectations最新文献

{"title":"‘So Let's Go On Like This?’—Shared Decision-Making and the Use of Outcome Information in Routine Care Management for People With Multiple Sclerosis","authors":"Olga C. Damman,&nbsp;Laxsini Murugesu,&nbsp;Vincent de Groot,&nbsp;Brigit A. de Jong","doi":"10.1111/hex.70009","DOIUrl":"10.1111/hex.70009","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This qualitative study used the following: (a) observations of clinical encounters (<i>N</i> = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (<i>N</i> = 17) and (c) interviews with those HCPs (<i>N</i> = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patients after signalling and discussing ‘problems’. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients' preferences, especially related to patients' experiences and priorities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices were not explicitly mentioned or discussed. However, discussions about patients' experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>People with MS contributed as research participants and provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11500206/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142513308","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 Dilemmas and Opportunities of Co-Creating Health Interventions to Fit Local Contexts: An Ethnographic Study on the Adaptation of Clinical Guidelines in Tanzania","authors":"Haika Osaki,&nbsp;Morten Skovdal,&nbsp;Jane Brandt Sørensen,&nbsp;Nanna Maaløe,&nbsp;Natasha Housseine,&nbsp;Brenda Sequeira Dmello,&nbsp;Columba Mbekenga","doi":"10.1111/hex.70073","DOIUrl":"10.1111/hex.70073","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;Healthcare providers' role in co-creating health interventions and implementation strategies has evolved significantly, and yet, there is little documentation of this from low-resource settings. This study aims to share the dilemmas of engaging healthcare providers in co-creating locally adapted clinical guidelines for maternity facilities in Dar es Salaam, Tanzania, and strategies used to address them.&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;An ethnographic study explored the co-creation of locally adapted clinical guidelines for childbirth care within five maternity facilities in Dar es Salaam. Participant observations were conducted during 11 co-creation workshops. Six in-depth interviews explored participant experiences. Data were analyzed using Attride-Stirling's thematic network analysis framework.&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 analysis revealed four themes representing dilemmas in the co-creation process and strategies to improve co-creation: (i) navigating diverse contexts: adapting a single set of guidelines to various, diverse facilities was challenging; this was addressed through engaging in dialogue and flexibility while adjusting care practices. (ii) Competing knowledge systems and sources: differing knowledge sources between researchers and healthcare providers challenged discussions on recommended practices. However, validating scientific recommendations with practical care experience in this context helped bridge this gap. (iii) Fostering meaningful participation: participation was time-consuming for some. However, early stakeholder engagement and facility-led participant selection facilitated the meaningful involvement of healthcare providers. (iv) Power imbalances: power dynamics influenced the co-creation process; involving stakeholders in planning and co-facilitating workshops helped mitigate these imbalances and encourage more equal participation.&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;Navigating contextual variation, differences in knowledge systems, meaningful participation and power dynamics were key challenges in the co-creation process. However, reflexivity, open and honest dialogue with stakeholders and early engagement enhanced the co-creation process. Co-creating locally adapted clinical guidelines with frontline healthcare workers and scientific experts is essential for feasibility and safety. Further research is needed to explore context specificity, decision-making and the efficacy of co-creation in low-resource settings.&lt;/p&gt;\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11500208/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142513310","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 Safe Environment for Every Kid Model in the Swedish Child Health Services: Adoption and Introduction in a Healthcare Region","authors":"Marie Golsäter,&nbsp;Ann-Christine Andersson","doi":"10.1111/hex.70078","DOIUrl":"10.1111/hex.70078","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Early support for children and families in need can improve children's health and development. In a Swedish region, a new working model called Safe Environment for Every Kid (SEEK) was introduced in the Child Health Services to facilitate the early identification of psychosocial risk factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The aim of this study was to describe the adoption and introduction of the SEEK model in the Child Health Services of Region Jönköping County.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Quantitative data were analysed using descriptive statistics, whereas qualitative data were analysed separately by a thematic approach. The results were then interpreted together with documents (including CHS management meeting notes and documents describing planning and training sessions) using an exploratory mixed-methods approach to give a comprehensive description of the adoption and introduction of the SEEK model.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The results show that the SEEK model improved coordination and collaboration, which led to better integrated care for children and families. The structure was regarded as supportive when introducing the SEEK model in Child Health Services. The questionnaire, as part of the SEEK model, was used in 88% of possible health visits. The most reported reason for not using it was a lack of time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The desire to make a difference and thereby promote better health and development for children was a crucial factor for the nurses in adopting the SEEK model in their clinical practice. The design using coaches was also appreciated and supported the adoption and introduction of the SEEK model.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Parents and healthcare professionals did not contribute to the research process. The results are based on dialogues between CHS nurses and parents after the parents filled in the SEEK questionnaire, providing an understanding of professional relationships when dealing with challenging issues.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11497052/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142513311","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":"An Interactive Vision-Based 3D Augmented Reality System for In-Home Physical Rehabilitation: A Qualitative Inquiry to Inform System Development","authors":"Afolasade Fakolade,&nbsp;Adriana C. Salvia,&nbsp;Siona Phadke,&nbsp;Manuela Kunz","doi":"10.1111/hex.70020","DOIUrl":"10.1111/hex.70020","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;Postoperative physical rehabilitation is crucial after total joint replacement (TJR). However, completing the recommended levels of postoperative physical exercise is challenging for many older adults with TJR. Lack of adequate postoperative physical exercise has negative consequences on rehabilitation outcomes. Innovative rehabilitation tools for postoperative physical exercises are needed to ensure successful rehabilitation outcomes among older adults with TJR.&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 explore key knowledge users' perspectives about how to design an interactive vision-based three-dimensional augmented reality system (3D ARS) to support in-home postoperative physical rehabilitation for older adults with TJR.&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 descriptive study involving 11 semi-structured interviews and six focus groups with 42 older adults with TJR and four unrelated family caregivers. Data 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;Participant insights were grouped into two main themes: (1) dreaming up possibilities and (2) being pragmatic. The first theme captured participants' reflections on the potential utility of a 3D ARS for postoperative physical rehabilitation and features that could be embedded in the 3D ARS to support successful postoperative physical rehabilitation. The second theme captured participants' reflections on practical issues and considerations that could impact access and usage of the 3D ARS.&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;These findings provide researchers, rehabilitation providers and system developers with the foundations for designing, implementing and evaluating innovative augmented reality tools that support effective in-home physical rehabilitation among older adults with TJR.&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;Research users (i.e., individuals and organisations invested in and using the research findings) were actively engaged throughout this work. Specifically, a meeting was held between the research team and representatives of an Expert by Experience team (individuals with lived experience), which was established to support the National Research Council's (organisation) Aging in Place programme","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11496999/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142513300","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":"Perceived Impact of Healthcare Relationships and Interactions on Parental Experiences of Prenatal Diagnosis and Termination of Pregnancy for Foetal Anomaly on the Island of Ireland","authors":"Suzanne Heaney,&nbsp;Mark Tomlinson,&nbsp;Áine Aventin","doi":"10.1111/hex.70068","DOIUrl":"10.1111/hex.70068","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The aim of this study was to explore parents' experiences of their relationships and interactions with healthcare professionals (HCPs) during care related to prenatal diagnosis and termination of pregnancy for foetal anomaly (TOPFA).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative approach was used. Participants included 33 parents (23 women and 10 men) from Northern Ireland (<i>n</i> = 11) and Ireland (<i>n</i> = 22) who had a TOPFA. Data collection methods included semi-structured interviews and written narrative accounts. Data were analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Findings confirmed that TOPFA was a traumatic, life-altering experience for parents, impacting their health and well-being. The actions, behaviours and words of HCPs impacted how parents perceived and interpreted their healthcare experiences and their access to services and supports. In relation to this, five themes are presented: (1) the importance of compassionate and non-judgemental care, (2) the value of effective information and communication, (3) the desire for compassionate care for baby and facilitation of memory making, (4) the need for continuity of care and (5) parents' experiences of healthcare relationships during times of legislative change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This research reveals the important role HCPs play in helping parents cope with prenatal testing and TOPFA. Parents who had a positive relationship with an HCP, in which information was communicated effectively and compassionate and non-judgmental care was provided, felt more supported and more able to accept and adapt to their loss.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>An advisory group composed of parents who had experienced TOPFA and HCPs with experience in caring for such families were involved in the study from the outset, contributing to the design and development of data collection materials, interpretation of the findings and design of dissemination materials.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11491545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142481351","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":"Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness: Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial","authors":"Andrew McPherson,&nbsp;Vibhu Paudyal,&nbsp;Richard Lowrie,&nbsp;Helena Heath,&nbsp;Jane Moir,&nbsp;Natalie Allen,&nbsp;Nigel Barnes,&nbsp;Hugh Hill,&nbsp;Adnan Araf,&nbsp;Cian Lombard,&nbsp;Steven Ross,&nbsp;Sarah Tearne,&nbsp;Parbir Jagpal,&nbsp;Versha Cheed,&nbsp;Shabana Akhtar,&nbsp;George Provan,&nbsp;Andrea Williamson,&nbsp;Frances S. Mair","doi":"10.1111/hex.70070","DOIUrl":"10.1111/hex.70070","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 a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH.&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;Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF).&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;In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging.&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;People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study reports findings and learning relevant to involvement of people with li","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11489131/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142481350","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":"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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}