Health Expectations最新文献

{"title":"Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study","authors":"Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew-Graham","doi":"10.1111/hex.70131","DOIUrl":"10.1111/hex.70131","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Patient and public involvement and engagement (PPIE) is integral to health research. Reporting of PPIE methods and impact is becoming increasingly common in health research. However, reporting on PPIE in studies using large, routinely collected electronic health record data sets is less common. Anecdotal evidence suggests that involvement in this research context is more challenging and offers fewer opportunities for meaningful influence on the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>This paper reports the involvement approach for a Clinical Practice Research Datalink (CPRD) study and critically reflects on the process and impact of involving young people, parents and carers in research using this UK primary care electronic health record data set.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The CHOOSE study investigated mental health diagnoses of children and young people (1–24 years) during the COVID-19 pandemic using the CPRD. The study was informed by a Lived Experience Advisory Panel (LEAP) which consisted of 13 members including 8 young people (13–25 years) with lived experience of mental health difficulties and 5 parents/carers, with involvement activities facilitated by project partners, mental health research charity, The McPin<sup>R</sup> Foundation. We reflect on this process in this manuscript.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Key benefits of involving people with lived experience in this research included making sense of and contextualising findings and ensuring that they were focused on making a difference to young people's lives. Challenges included the fixed nature of the CPRD data, which did not capture all the information people with lived experience perceived to be important. Researchers expressed limited time for PPIE activities although that was compensated by McPin colleagues who organised and facilitated online meetings, and supported the young people, parents and carers during and between meetings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This paper describes an approach to patient and public involvement in an electronic health record database study. Working collaboratively with young people, carers and other stakeholders requires sufficient time and adequate resources. We also highlight the importance of appropriate training and support and being transparent about the limitations of PPIE involvement.</p>\u0000 </section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70131","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857083","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 Value of Clinical Prediction Models in General Practice: A Qualitative Study Exploring the Perspectives of People With Lived Experience of Depression and General Practitioners","authors":"Andrew S. Moriarty, Joanne Castleton, Dean McMillan, Richard D. Riley, Kym I. E. Snell, Lucinda Archer, Lewis W. Paton, Simon Gilbody, Carolyn A. Chew-Graham","doi":"10.1111/hex.70059","DOIUrl":"10.1111/hex.70059","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Prediction models are increasingly being used to guide clinical decision making in primary care. There is a lack of evidence exploring the views of patients and general practitioners (GPs) in primary care around their use and implementation. We aimed to better understand the perspectives of GPs and people with lived experience of depression around the use of prediction models and communication of risk in primary care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative methods were used. Data were generated over 6 months (April to October 2022) through semi-structured interviews with 23 people with lived experience of depression and 22 GPs. A multidisciplinary research team and Patient Advisory Group were involved throughout the study. Data were analysed inductively using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>GPs describe using prediction models in consultations only when the models are either perceived to be useful (e.g., because they help address an important clinical problem) or if GPs feel compelled to use them to meet financial or contractual targets. These two situations are not mutually exclusive, but if neither criterion is met, a model is unlikely to be used in practice. People with lived experience of depression and GPs reported that communication of model outputs should involve a combination of risk categories, numerical information and visualisations, with discussions being tailored to the individual patients involved. Risk prediction in a mental health context was perceived to be more challenging than for physical health conditions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Clinical prediction models are used in practice but thought must be given at the study development stage to how results will be presented and discussed with patients. Meaningful, embedded public and patient involvement and engagement are recommended when developing or implementing clinical prediction models.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>We used a combination of embedded consultation and collaboration/co-production in our approach to public and patient involvement in this study. A Patient Advisory Group made up of people with lived experience of depression were involved from study conception and contributed to study design, participant recruitment, interpretation of findings and dissemination (including in the preparation of this manuscript).</p>\u0000","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70059","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857087","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":"Consensus on the Structure and Content of Birth Plans: A Modified Delphi Study","authors":"Françoise Vendittelli,&nbsp;Lucie Adalid,&nbsp;Violaine Peyronnet,&nbsp;Sophie Guillaume,&nbsp;Nathalie Piquée,&nbsp;Aurore Viard-Cretat,&nbsp;Catherine Crenn-Hébert,&nbsp;Olivier Rivière,&nbsp;Candy Guiguet-Auclair,&nbsp;Study Group","doi":"10.1111/hex.70124","DOIUrl":"10.1111/hex.70124","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Few pregnant women in France wrote birth plans as in many other countries. The literature stresses the heterogeneity of birth plan content, which limits the utility of assessing the effects of birth plans on women's experience of childbirth. This study aimed to obtain a French national consensus on the structure and content of birth plans.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A multidisciplinary steering committee was established. An electronic modified Delphi study was conducted to develop a structure and content for birth plans between November 2022 and June 2023. During three Delphi consensus rounds, panellists, including perinatal health care professionals and user representatives, were asked to rate individually and independently each proposed section and subsection formulation of the birth plan for its appropriateness. An external board assessed the understandability of the final birth plan's preamble and content.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The steering committee proposed 103 formulations corresponding to items to be covered in a birth plan, categorized into 8 sections and 30 subsections, for evaluation in the Delphi rounds. The first round was completed by 42 panellists (mainly midwives), the second by 39, and the third by 36. Finally, the steering committee approved the final components of the structured birth plan in 8 sections and 19 subsections, after its reviewing by the 21 members of the external board.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A French national Delphi process, after three rounds and validation by an external board, made it possible to reach a consensus on the structure and content of a birth plan in 8 sections and 19 subsections.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>User representatives were included as experts in the Delphi rounds, and in the external board to approve the final version of the structured birth plan.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70124","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857081","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 Influencing the Oral Health Behaviours of Autistic Children and Young People: A Qualitative Study","authors":"Jo Erwin,&nbsp;Sarah Neill,&nbsp;Tara Vassallo,&nbsp;Isaac Vassallo,&nbsp;Rob Witton,&nbsp;Martha Paisi","doi":"10.1111/hex.70130","DOIUrl":"10.1111/hex.70130","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Poor oral health (OH) in childhood can cause pain, affect quality of life and significantly impact adult OH. Autistic children and young people (CYP) experience inequalities in OH and are at higher risk of cavities and gum disease than neurotypical CYP.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To provide evidence and insights into the factors affecting the OH behaviours of ACYP from the perspective of ACYP, their parents/carers and Dental Health Professionals (DHPs).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Semi-structured online or face-to-face interviews were conducted with CYP, parents/carers and DHPs in Southwest England.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Nineteen ACYP (aged 5–18 years old), 20 parents/carers and 16 DHPs were interviewed. The themes identified were as follows: Sensory sensitivities and diet; Toothbrushing ‘battles’; Coping with the stresses of daily life in a neurotypical world; Awareness of autism and understanding of challenges to good OH; The impact on parents of trying to care their child's OH; CYP and parent/carers difficulties in obtaining OH support; What ‘good support’ looks like.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>An increased awareness among DHPs, health and social care professionals of autism and the challenges to OH that CYP face is needed. Providing early support, strategies and resources to CYP and their parents/carers has the potential to help establish positive OH behaviours.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contribution</h3>\u0000 \u0000 <p>The research team worked closely with members of the autistic community on this project. The methods used in this project were developed together with a research advisory group which included four ACYP (aged 9–17) and their parents. The team also worked with members of a youth club for ACYP aged 10–17 years old. All research documents and materials were co-produced. Members of the advisory group (T.V. and I.V.) contributed to the interpretation of the research findings and the writing of this manuscript.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70130","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142848446","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":"Causes, Solutions and Health Inequalities: Comparing Perspectives of Professional Stakeholders and Community Participants Experiencing Low Income and Poor Health in London","authors":"Neil McHugh,&nbsp;Rachel Baker,&nbsp;Cam Donaldson,&nbsp;Ahalya Bala,&nbsp;Marta Mojarrieta,&nbsp;Gregory White,&nbsp;Olga Biosca","doi":"10.1111/hex.70128","DOIUrl":"10.1111/hex.70128","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Engaging with the public can influence policy decisions, particularly towards more radical policy change. While established research exists exploring public perceptions on causes of health inequalities, much less exists on how to tackle health inequalities in the UK. Despite an emphasis on ‘lived experience’, currently no study has focused on how individuals with very poor health conceive of both causes of, and solutions to, health inequalities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Q methodology was used to identify and describe the shared perspectives that exist on causes of, and solutions to, health inequalities experienced in low-income communities. Community participants living with low-incomes and poor health (<i>n</i> = 20) and professional stakeholders (<i>n</i> = 20) from London rank ordered 34 ‘Causes’ and 39 ‘Solutions’ statements onto quasi-normal shaped grids according to their point of view. Factor analysis defined factors for both ‘Causes’ and ‘Solutions’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Analysis produced three-factor solutions for both the ‘Causes’ and ‘Solutions’. ‘Causes’ are (i) ‘Systemic inequality and poverty’, (ii) ‘Ignored and marginalised communities’, (iii) ‘Precariousness, chronic stress and hopelessness’. ‘Solutions’ are (i) ‘Meeting basic needs and providing opportunities to thrive’, (ii) ‘Empowering individuals to take control’, (iii) ‘Supporting healthy choices’. No professional stakeholders aligned with ‘Ignored and marginalised communities’ while at least one community participant or professional stakeholder aligned with all other factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Results support the view that the public has a relatively sophisticated understanding of causes of health inequalities and help challenge assumptions held by policy actors that lay members of the public do not recognise and understand more upstream ways to respond to health inequalities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The public contributed to the design of the Q study. Surveys and interviews with community participants informed the development of the statement set and the statement set was also piloted with community participants and finalised based on feedback.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70128","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840373","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":"Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services","authors":"Marita Hennessy,&nbsp;Rebecca Dennehy,&nbsp;Hannah O'Leary,&nbsp;Keelin O'Donoghue,&nbsp;RE:CURRENT Research Advisory Group","doi":"10.1111/hex.70125","DOIUrl":"10.1111/hex.70125","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;Involving knowledge users in research can facilitate the translation of evidence into policy and practice. How to best involve and support various types of knowledge users, including patient and public involvement contributors, in research is an identified knowledge gap. We conducted a national evaluation of recurrent miscarriage care supported by a Research Advisory Group (convened in March 2020) comprising a range of knowledge users, including parent advocates and people involved in the management/provision of services. The Group met virtually nine times, and actively collaborated beyond this on various research activities across the project. In this paper, we share insights from our collective evaluation of these involvement efforts.&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 drew on records kept over the timespan of the project to describe involvement activities and experiences. Advisory Group members participated in an electronic survey to assess their involvement experiences at two time points (February 2021 and May 2022); we analysed the results descriptively. In May 2022, we hosted a virtual World Café, comprising the Research Team and Advisory Group, to explore what worked well and what could have been improved regarding involvement activities within the project; we analysed this data thematically.&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;Responses to both rounds of the survey were positive, with people reporting: their ability to discuss research issues, contribute to the research, express their own views; feeling valued as a partner; that they could bring their own ideas and values to the research; perceived potential to gain status, expertise, or credibility because of their involvement. Themes constructed from the Word Café discussions highlighted that structural and relational spaces shaped the accessibility and experience of involvement.&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;Members reported a positive and rewarding experience with a visible impact on the research process but highlighted issues with the feasibility and scope of the research protocol and challenges to autonomous involvement in aspects reliant on clinical expertise. Our analysis reinforces that the relational nature of involvement takes precedence over instrumental aspects or techniques. Realistic study protocols that allow time and space for the evolving nature of research with knowledge users, and institutional and financial support to facilitate meaningful involvement, are needed.&lt;/p&gt;\u0000 &lt;/s","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70125","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840374","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 Use of Arts-Based Methods to Enhance Patient Engagement in Health Research","authors":"Emily K. Phillips,&nbsp;Anna M. Chudyk,&nbsp;Caroline Monnin,&nbsp;Annette S. H. Schultz,&nbsp;Rakesh C. Arora,&nbsp;Todd A. Duhamel,&nbsp;Sheila O'Keefe-McCarthy","doi":"10.1111/hex.70127","DOIUrl":"10.1111/hex.70127","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Patient and care partner engagement in research (PER) is important in generating knowledge to improve healthcare. Arts-based methods (ABM) use art in the research process to share aesthetic knowledge, which is knowledge that may be too complex to share only verbally. Together, PER and ABM are potentially synergistic, as both are participatory, problem-focused, dialogic, and collaborative; yet little is known of the utility of ABM for PER.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A narrative review was performed to identify, collate, and summarize the ways ABM has been used with PER and share the impacts of ABM on PER. The databases CINAHL, Scopus, and PubMed were searched, and 15 articles were included.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A wide variety of ABM were used for PER, with some studies using multiple ABMs. The use of ABM for PER was reported to be decolonizing, shifted power from researchers to people with lived experience, and reduced tokenism. People with lived experience shared their knowledge directly through their art, deepening the understanding of their emotions, feelings, and relationships.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Researchers should consider the benefits of the participatory nature of ABM and explore how to engage people with lived experience in their work beyond data collection. Researchers engaging people with lived experience should consider using ABM as a way to operationalize PER to elicit aesthetic knowledge and strengthen power equalization.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>No patients or members of the public contributed to this review due to a lack of funding to support their meaningful involvement.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70127","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142831063","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 Different Sampling Strategies: A Description of Our Success in Reaching Hard-to-Reach Turkish and Moroccan Immigrant Women in The Netherlands","authors":"Nora Hamdiui,&nbsp;Maartje Boer,&nbsp;Jim van Steenbergen,&nbsp;Maria van den Muijsenbergh,&nbsp;Aura Timen,&nbsp;Mart Stein","doi":"10.1111/hex.70105","DOIUrl":"10.1111/hex.70105","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;In the Netherlands, since 1996, there is a national cervical cancer (CC) screening programme in place for women aged 30–60 years. The participation of Turkish- and Moroccan-Dutch women is very low. To facilitate their informed decision-making, we developed a culturally sensitive educational video, and evaluated it through a questionnaire study. Since we used multiple strategies for the recruitment of respondents, we aimed (1) to explore which sampling strategy resulted in which type of respondents, (2) to investigate which sampling strategy and individual characteristics were associated with successful recruitment of other respondents, and (3) to examine similarity between those recruited via respondent-driven sampling (RDS).&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;Six sampling strategies were used and compared to explore their recruitment success: (1) RDS (i.e. peer-to-peer recruitment), (2) public and private women's Facebook groups, (3) Instagram, (4) researchers' network, (5) offline organizations (e.g., community centres and mosques), and (6) other channels (e.g. flyers, infographics, and information meetings). To do this, &lt;i&gt;χ&lt;/i&gt;&lt;sup&gt;2&lt;/sup&gt; tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.&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;Overall, 782 Moroccan- and 696 Turkish-Dutch respondents were included in the analysis. Almost 40% filled out the questionnaire via RDS. RDS yields more often older, lower educated, and first-generation immigrant women than average. Respondents recruited via RDS have more often low CC screening knowledge and make more often uninformed CC screening decisions than average. Social media channels, however, yielded more younger, highly educated, and second-generation immigrant women than average. Sociodemographic characteristics and attitudes towards CC screening varied more strongly within than between network trees. The probability that paired respondents within a network tree had similar characteristics varied strongly depending on the characteristic.&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;By using RDS and asking respondents to recruit peers, the more hard-to-reach individuals (i.e. older, lower educated, and first-generation immigrants) were reached. By using social media channels, younger, highly educated, and second-generation individuals can be recruited. RDS yielded more often women with low CC screening knowledge and women making uninformed CC screening decisions. To reach the individuals in need of tail","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70105","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142831039","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 Development of an International Information Brochure on the Multimodal Assessment of Disorders of Consciousness","authors":"Melissa Hohl,&nbsp;Lina Willacker,&nbsp;Theresa Marie Raiser,&nbsp;Martin Justinus Rosenfelder,&nbsp;Katja Kuehlmeyer,&nbsp;Marta Bassi,&nbsp;Angela Comanducci,&nbsp;Chiara Valota,&nbsp;Jacobo Diego Sitt,&nbsp;Andreas Bender","doi":"10.1111/hex.70097","DOIUrl":"10.1111/hex.70097","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Disorders of consciousness (DoC) refers to a group of clinical conditions of altered consciousness. To improve their diagnosis and prognosis, multimodal assessment can be of great importance. Informal caregivers of people with DoC who are confronted with new technologies as such can benefit from interventions to expand their health literacy, i.e., the ability to use information to make health decisions for oneself and others.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We developed an information brochure on multimodal assessment for DoC in a participatory process, with decisions made by a steering group. The process was based on a methodological framework for the development of patient decision aids that built on the International Patient Decision Aid Standards (IPDAS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>On the background of a broad variety of needs, the priority was to focus on the explanation of multimodal testing and provide information about its uncertainty. Its development aimed at enhancing informal caregivers' understanding of implications of results from multimodal assessment and its relevance for prognosis. It should avoid the portrayal of information that could lead to the impression of false hope or suboptimal rehabilitation care. Informal caregivers rated its usability and acceptability highly, though they preferred less technical language.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The participatory process was crucial to the project. Future studies should investigate the effectiveness of the brochure in fostering informal caregivers' health literacy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Informal caregivers of people with DoC were deliberately included in the steering group and they participated in a field test of the prototype brochure.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11645296/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142824923","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":"Feasibility Testing of a Health Literacy Intervention With Adolescents and Young Adults in South Africa: The LifeLab Soweto Programme","authors":"Lisa J. Ware,&nbsp;Delisile Kubheka,&nbsp;Thato Mdladlamba,&nbsp;Khuthala Mabetha,&nbsp;Mark Hanson,&nbsp;Keith M. Godfrey,&nbsp;Kathryn Woods-Townsend,&nbsp;Shane Norris","doi":"10.1111/hex.70121","DOIUrl":"10.1111/hex.70121","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;Low health literacy levels during adolescence and young adulthood (AYA) may impact acute healthcare access and longer-term health outcomes. Previous research in South African AYA suggests that health literacy levels are typically suboptimal but few interventions exist. This study aimed to test the acceptability and feasibility of a co-created, interactive health literacy intervention (LifeLab-Soweto) with AYA in Soweto, South Africa.&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;Participants (18–24 years, &lt;i&gt;n&lt;/i&gt; = 107) were recruited (September–October 2022) from a youth development centre database by telephone and through snowball sampling. AYA involved in the co-creation process were excluded. Pre-intervention data on participant age, gender identity and ability to correctly identify a normal blood pressure (BP) reading were captured via survey. Post-intervention, participants repeated the BP question and completed a satisfaction survey. Additionally, &lt;i&gt;n&lt;/i&gt; = 31 AYA agreed to an in-depth interview about their LifeLab-Soweto experience. Interview transcripts were analysed using inductive 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;Participants (mean age 21 ± 2.4 years; 59% female, 39% male, 2% nonbinary) generally viewed LifeLab-Soweto as well-designed, relevant, simple to follow, fun, useful, and interesting, with most reporting an increased understanding of health and that they would use this new knowledge. Comparing pre- and post-intervention BP question accuracy, males showed the greatest improvement in scores. Interviews showed that, while LifeLab-Soweto was not what AYA were expecting, gains in health knowledge led AYA to consider changes in health behaviours including accessing health services.&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;Life-Soweto presents an acceptable, feasible and relevant health literacy intervention for South African youth with potential to improve health literacy and health behaviours.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient and Public Involvement&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To ensure the health literacy intervention was contextually relevant, age appropriate, and gender inclusive, a group of 40 adolescents (aged 18–24 years, male, female and non-binary) were recruited from Soweto to firstly identify the health topics that were most pressing in their daily lives. This youth advisory group identified stress as a major challenge impacting physical and mental health, h","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11634816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142814938","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}