Jo Erwin, Sarah Neill, Tara Vassallo, Isaac Vassallo, Rob Witton, Martha Paisi
Background
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.
Objective
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).
Method
Semi-structured online or face-to-face interviews were conducted with CYP, parents/carers and DHPs in Southwest England.
Results
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.
Conclusions
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.
Public Contribution
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.
{"title":"Factors Influencing the Oral Health Behaviours of Autistic Children and Young People: A Qualitative Study","authors":"Jo Erwin, Sarah Neill, Tara Vassallo, Isaac Vassallo, Rob Witton, 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}
Neil McHugh, Rachel Baker, Cam Donaldson, Ahalya Bala, Marta Mojarrieta, Gregory White, Olga Biosca
Background
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.
Methods
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 (n = 20) and professional stakeholders (n = 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’.
Results
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.
Conclusion
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.
Patient or Public Contribution
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.
{"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, Rachel Baker, Cam Donaldson, Ahalya Bala, Marta Mojarrieta, Gregory White, 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}
Marita Hennessy, Rebecca Dennehy, Hannah O'Leary, Keelin O'Donoghue, RE:CURRENT Research Advisory Group
<div> <section> <h3> Introduction</h3> <p>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.</p> </section> <section> <h3> Methods</h3> <p>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.</p> </section> <section> <h3> Results</h3> <p>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.</p> </section> <section> <h3> Conclusion</h3> <p>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.</p> </s
{"title":"Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services","authors":"Marita Hennessy, Rebecca Dennehy, Hannah O'Leary, Keelin O'Donoghue, RE:CURRENT Research Advisory Group","doi":"10.1111/hex.70125","DOIUrl":"10.1111/hex.70125","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>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.</p>\u0000 </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}
Emily K. Phillips, Anna M. Chudyk, Caroline Monnin, Annette S. H. Schultz, Rakesh C. Arora, Todd A. Duhamel, Sheila O'Keefe-McCarthy
Introduction
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.
Methods
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.
Results
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.
Conclusion
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.
Patient or Public Contribution
No patients or members of the public contributed to this review due to a lack of funding to support their meaningful involvement.
导言：患者和护理伙伴参与研究（PER）对于创造知识以改善医疗保健非常重要。基于艺术的方法（ABM）在研究过程中使用艺术来分享美学知识，这些知识可能过于复杂，无法仅通过口头分享。由于 PER 和 ABM 都是参与式的、以问题为中心的、对话式的和协作式的，因此二者结合在一起可能会产生协同效应；然而，人们对 ABM 在 PER 中的效用知之甚少：我们进行了一项叙述性综述，以确定、整理和总结 ABM 与 PER 的使用方式，并分享 ABM 对 PER 的影响。检索了 CINAHL、Scopus 和 PubMed 等数据库，共收录了 15 篇文章：结果：在 PER 中使用了多种 ABM，其中一些研究使用了多种 ABM。据报道，在 PER 中使用 ABM 具有去殖民化的作用，将权力从研究人员转移到了有生活经验的人身上，并减少了象征性的做法。有生活经验的人通过他们的艺术直接分享他们的知识，加深了对他们的情绪、情感和关系的理解：结论：研究人员应考虑到注重结果的管理的参与性所带来的益处，并探索如何让有生活经验的人参与到数据收集以外的工作中。让有生活经验的人参与的研究人员应考虑使用 ABM 作为操作 PER 的一种方式，以激发审美知识并加强权力平等：由于缺乏资金支持他们进行有意义的参与，没有患者或公众成员为本综述做出贡献。
{"title":"The Use of Arts-Based Methods to Enhance Patient Engagement in Health Research","authors":"Emily K. Phillips, Anna M. Chudyk, Caroline Monnin, Annette S. H. Schultz, Rakesh C. Arora, Todd A. Duhamel, 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}
Nora Hamdiui, Maartje Boer, Jim van Steenbergen, Maria van den Muijsenbergh, Aura Timen, Mart Stein
<div> <section> <h3> Introduction</h3> <p>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).</p> </section> <section> <h3> Methods</h3> <p>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, <i>χ</i><sup>2</sup> tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.</p> </section> <section> <h3> Results</h3> <p>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.</p> </section> <section> <h3> Conclusions</h3> <p>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
导言：荷兰自 1996 年起开始实施一项针对 30-60 岁妇女的全国宫颈癌（CC）筛查计划。土耳其裔和摩洛哥裔荷兰妇女的参与率非常低。为了帮助她们做出知情决定，我们制作了一部具有文化敏感性的教育视频，并通过问卷调查对其进行了评估。由于我们采用了多种策略来招募受访者，因此我们的目标是：（1）探讨哪种抽样策略会产生哪种类型的受访者；（2）调查哪种抽样策略和个人特征与成功招募到其他受访者有关；（3）研究通过受访者驱动抽样（RDS）招募到的受访者之间的相似性：我们使用了六种抽样策略并对其进行了比较，以探讨其招募成功率：(1) RDS（即点对点招募）；(2) 公共和私人妇女 Facebook 群组；(3) Instagram；(4) 研究人员网络；(5) 线下组织（如社区中心和清真寺）；(6) 其他渠道（如传单、信息图表和信息会议）。为此，我们进行了χ2 检验、多元逻辑回归和类内相关性（ICCs）检验：共有 782 名摩洛哥受访者和 696 名土耳其-荷兰受访者参与了分析。近 40% 的受访者通过 RDS 填写了问卷。与平均水平相比，通过 RDS 募集的受访者多为年龄较大、受教育程度较低的第一代移民妇女。与平均水平相比，通过 RDS 招募的受访者往往对 CC 筛查知识知之甚少，往往在不知情的情况下做出 CC 筛查决定。然而，社交媒体渠道的受访者中，年轻、受过高等教育和第二代移民妇女的比例高于平均水平。与网络树之间相比，网络树内部的社会人口特征和对 CC 筛查的态度差异更大。网络树内配对受访者具有相似特征的概率因特征不同而有很大差异：通过使用 RDS 和要求受访者招募同伴，较难接触到的人群（即年龄较大、受教育程度较低和第一代移民）被接触到了。通过使用社交媒体渠道，可以招募到年轻、高学历和第二代移民。在 RDS 中，更多的女性对 CC 筛查知之甚少，也更多的女性在不知情的情况下做出了 CC 筛查决定。为了接触到需要定制信息或符合其需求的干预措施的人群，我们建议使用 RDS 作为干预措施的实施策略：在 RDS 之后，我们让摩洛哥和土耳其裔荷兰妇女参与招募其他摩洛哥和土耳其裔荷兰妇女。通过招募，妇女们能够填写我们的调查问卷，并观看我们具有文化敏感性的教育视频，以改善她们对 CC 筛查计划的知情决策。
{"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, Maartje Boer, Jim van Steenbergen, Maria van den Muijsenbergh, Aura Timen, Mart Stein","doi":"10.1111/hex.70105","DOIUrl":"10.1111/hex.70105","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>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).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>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, <i>χ</i><sup>2</sup> tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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}
Melissa Hohl, Lina Willacker, Theresa Marie Raiser, Martin Justinus Rosenfelder, Katja Kuehlmeyer, Marta Bassi, Angela Comanducci, Chiara Valota, Jacobo Diego Sitt, Andreas Bender
Background
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.
Methods
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).
Results
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.
Conclusion
The participatory process was crucial to the project. Future studies should investigate the effectiveness of the brochure in fostering informal caregivers' health literacy.
Patient or Public Contribution
Informal caregivers of people with DoC were deliberately included in the steering group and they participated in a field test of the prototype brochure.
{"title":"Participatory Development of an International Information Brochure on the Multimodal Assessment of Disorders of Consciousness","authors":"Melissa Hohl, Lina Willacker, Theresa Marie Raiser, Martin Justinus Rosenfelder, Katja Kuehlmeyer, Marta Bassi, Angela Comanducci, Chiara Valota, Jacobo Diego Sitt, 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}
Lisa J. Ware, Delisile Kubheka, Thato Mdladlamba, Khuthala Mabetha, Mark Hanson, Keith M. Godfrey, Kathryn Woods-Townsend, Shane Norris
<div> <section> <h3> Introduction</h3> <p>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.</p> </section> <section> <h3> Methods</h3> <p>Participants (18–24 years, <i>n</i> = 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, <i>n</i> = 31 AYA agreed to an in-depth interview about their LifeLab-Soweto experience. Interview transcripts were analysed using inductive thematic analysis.</p> </section> <section> <h3> Results</h3> <p>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.</p> </section> <section> <h3> Conclusion</h3> <p>Life-Soweto presents an acceptable, feasible and relevant health literacy intervention for South African youth with potential to improve health literacy and health behaviours.</p> </section> <section> <h3> Patient and Public Involvement</h3> <p>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
{"title":"Feasibility Testing of a Health Literacy Intervention With Adolescents and Young Adults in South Africa: The LifeLab Soweto Programme","authors":"Lisa J. Ware, Delisile Kubheka, Thato Mdladlamba, Khuthala Mabetha, Mark Hanson, Keith M. Godfrey, Kathryn Woods-Townsend, Shane Norris","doi":"10.1111/hex.70121","DOIUrl":"10.1111/hex.70121","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants (18–24 years, <i>n</i> = 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, <i>n</i> = 31 AYA agreed to an in-depth interview about their LifeLab-Soweto experience. Interview transcripts were analysed using inductive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Life-Soweto presents an acceptable, feasible and relevant health literacy intervention for South African youth with potential to improve health literacy and health behaviours.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Involvement</h3>\u0000 \u0000 <p>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}
Jack C. Collins, Amanda J. Wheeler, Sara S. McMillan, Jie Hu, Sarira El-Den, Helena Roennfeldt, Claire L. O'Reilly
<div> <section> <h3> Background</h3> <p>Psychotropic medications are a common treatment modality for people living with severe and persistent mental illness (SPMI). While effective in reducing relapse and hospitalisation, psychotropic medications cause numerous side effects, varying in nature and severity. Identification and management of side effects is crucial in the ongoing management of SPMI.</p> </section> <section> <h3> Objective</h3> <p>To characterise the side effects of psychotropic medications, experienced by a sample of consumers living with SPMI, using a validated tool.</p> </section> <section> <h3> Setting and Participants</h3> <p>Consumers with SPMI living in the community were recruited from all 25 community pharmacies across four Australian regions, which were allocated to the intervention arm of the Bridging the Gap between Physical and Mental Illness (<i>PharMIbridge</i>) randomised controlled trial (RCT).</p> </section> <section> <h3> Main Outcome Measures</h3> <p>Responses to the <i>My Medicines & Me Questionnaire</i> (<i>M3Q)</i>.</p> </section> <section> <h3> Results</h3> <p>Consumers (<i>n</i> = 156) most frequently reported side effects in the categories of sleep-related side effects (80.8%, <i>n</i> = 126), mood-related side effects (75.6%, <i>n</i> = 118) and weight and appetite changes (60.3%, <i>n</i> = 107). Daytime somnolence was the most reported individual side effect (68.6%, <i>n</i> = 107). Mood-related side effects were ranked as the most bothersome, followed by sleep-related side effects and weight and appetite changes. More than one-quarter (29.5%, <i>n</i> = 46) of consumers reported choosing not to take their medications due to side effects. Consumers more frequently told family and friends about the side effects rather than healthcare professionals.</p> </section> <section> <h3> Conclusions</h3> <p>An overwhelming majority of consumers experienced at least one side effect attributed to their psychotropic medication, with many experiencing multiple. These findings highlight the critical need to regularly engage with consumers to discuss, identify and manage side effects to treatment burden, reduce risk of non-adherence and improve their treatment experience.</p> </section> <section> <h3> Patient or Public Contribution</h3>
{"title":"Side Effects of Psychotropic Medications Experienced by a Community Sample of People Living With Severe and Persistent Mental Illness","authors":"Jack C. Collins, Amanda J. Wheeler, Sara S. McMillan, Jie Hu, Sarira El-Den, Helena Roennfeldt, Claire L. O'Reilly","doi":"10.1111/hex.70122","DOIUrl":"10.1111/hex.70122","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Psychotropic medications are a common treatment modality for people living with severe and persistent mental illness (SPMI). While effective in reducing relapse and hospitalisation, psychotropic medications cause numerous side effects, varying in nature and severity. Identification and management of side effects is crucial in the ongoing management of SPMI.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To characterise the side effects of psychotropic medications, experienced by a sample of consumers living with SPMI, using a validated tool.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Setting and Participants</h3>\u0000 \u0000 <p>Consumers with SPMI living in the community were recruited from all 25 community pharmacies across four Australian regions, which were allocated to the intervention arm of the Bridging the Gap between Physical and Mental Illness (<i>PharMIbridge</i>) randomised controlled trial (RCT).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Main Outcome Measures</h3>\u0000 \u0000 <p>Responses to the <i>My Medicines & Me Questionnaire</i> (<i>M3Q)</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Consumers (<i>n</i> = 156) most frequently reported side effects in the categories of sleep-related side effects (80.8%, <i>n</i> = 126), mood-related side effects (75.6%, <i>n</i> = 118) and weight and appetite changes (60.3%, <i>n</i> = 107). Daytime somnolence was the most reported individual side effect (68.6%, <i>n</i> = 107). Mood-related side effects were ranked as the most bothersome, followed by sleep-related side effects and weight and appetite changes. More than one-quarter (29.5%, <i>n</i> = 46) of consumers reported choosing not to take their medications due to side effects. Consumers more frequently told family and friends about the side effects rather than healthcare professionals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>An overwhelming majority of consumers experienced at least one side effect attributed to their psychotropic medication, with many experiencing multiple. These findings highlight the critical need to regularly engage with consumers to discuss, identify and manage side effects to treatment burden, reduce risk of non-adherence and improve their treatment experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 ","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/PMC11632627/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142808715","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}
María José Sanchís-Ramón, Elisa Chilet-Rosell, Andrés Peralta, Marta Puig-García, María Fernanda Rivadeneira, Cintia Caicedo, Ikram Benazizi-Dahbi, Blanca Lumbreras, Montse Nicols, Ana Cebrián, Wifredo Ricart, Ester Lopez-Miras, Lucy A. Parker
<div> <section> <h3> Introduction</h3> <p>We aimed to explore the impact of the COVID-19 pandemic and the resulting restrictions on the emotional state of people with type 2 diabetes mellitus (T2DM) and/or hypertension in Ecuador and Spain. Given the differences in sociopolitical and socioeconomic contexts between these two countries, the research focused on how these diverse environments and their management of social policies and pandemic strategies influenced the emotional well-being of individuals with chronic illnesses.</p> </section> <section> <h3> Methods</h3> <p>We conducted 36 semi-structured telephone interviews between August and December 2020 with adults diagnosed with T2DM and/or hypertension (19 in Ecuador, 17 in Spain). The interviews were recorded, anonymized and transcribed for thematic analysis. This approach allowed us to systematically identify and analyse themes related to the participants' emotional experiences during the pandemic.</p> </section> <section> <h3> Results</h3> <p>The results revealed a significant deterioration in the emotional state of participants, attributable to the stress generated by the health crisis and concerns related to their chronic illnesses. The situation elicited a range of emotions among participants, from boredom and apathy to fear, uncertainty and depression. The study highlighted how the impact on emotional well-being was shaped by the interplay between conjunctural determinants (measures to control COVID-19 infections) and structural factors driving inequalities (social class, gender, ethnicity).</p> </section> <section> <h3> Conclusion</h3> <p>We developed a conceptual framework illustrating how measures to control COVID-19 infections directly influenced economic, health and social determinants, which interacted with pre-existing inequalities and had a differential impact on individuals' emotional well-being. This framework can be useful for designing more effective and equitable social policies during future health crises, ensuring they address social needs and safeguard psychological and emotional well-being, particularly among vulnerable groups such as those with chronic illnesses.</p> </section> <section> <h3> Patient and Public Contribution</h3> <p>Thirty-six participants diagnosed with T2DM and/or hypertension (19 in Ecuador, 17 in Spain) contributed to the study by sharing their emotional experiences during the pandemic. Their detailed accounts enriched the research by providing valuab
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A demand from the cardiac surgery and heart transplantation department of a French (Lyon) university hospital to adopt an ex-vivo perfusion system of human donor hearts was a chance to actively involve patients in our hospital-based health technology assessment (HB-HTA) process.
Material and Methods
We selected an existing framework for patient involvement in HB-HTA and involved patients at two stages of the HB-HTA process: evaluation and dissemination. Firstly, we conducted a consultation-oriented workshop to gather patient perspectives on the introduction of the technology in our hospital, based on their significant experience of healthcare. Secondly, we organized an information-oriented workshop to communicate the HB-HTA results to the patients consulted, after the decision had been taken.
Results
We modified the framework for patient involvement to suit the local decision-making context, the HB-HTA methodology, and the type of technologies assessed in our institution. Patients perceived the ex-vivo perfusion system as a promising technology to facilitate access to heart transplantation. They emphasized the importance of a tailored information provided to patients about the potential use of the technology in their healthcare trajectories, and suggested involvement of patients to facilitate its implementation in hospitals.
Discussion
Modifying existing frameworks for patient involvement to fit specific local contexts should be encouraged, and has to address the need of timely information for decision-makers and patient recruitment issues. Decision to incorporate patient perspectives and experiences should be made on a project-by-project basis, and focus on innovative medical devices with expected significant impact on patient quality of life. Effective and transparent communication and prospective feedbacks from HB-HTA producers to patients are essential for a successful process.
Patient or Public Contribution
Three patients with a lived experience of heart transplantation, or another transplant procedure, or more broadly procedures involving innovative medical devices (specialists) and two patients recruited for societal issues and legitimacy of a collective voice were involved (generalists).
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