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Exploring Adolescents' Understanding, Experiences and Beliefs About Pain: A Qualitative Study 探讨青少年对疼痛的理解、体验与信念:一项质性研究。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-23 DOI: 10.1111/hex.70132
Isabelle Bogard, Julie Ayre, Jenna Smith, Joshua W. Pate, Andrew Sortwell, Jonah Gorringe, Georgia Gordon, Steven J. Kamper, Tie P. Yamato

Background

Pain is prevalent across the lifespan and contributes to significant societal and economic burdens. The public often holds misconceptions about pain and pain management. Despite this, there are no well-resourced public health initiatives delivering information about pain and pain management to the public. Adolescence is an opportune time to educate the public about pain. Health interventions designed for adolescents should reflect their understanding, beliefs and experiences; however, no studies explore this in non-clinical populations of adolescents. We aimed to explore adolescents' understanding, experiences and beliefs about pain to inform the development of a school-based pain education module.

Methods

We conducted semi-structured interviews with 25 adolescents in grades 7–10 (ages 11–16) attending Australian secondary schools. Interviews were conducted on video-conferencing software, audio-recorded, transcribed verbatim and analysed using Framework Analysis.

Results

We generated three themes: (i) physical and psychological pain are distinct, (ii) psychological and contextual factors influence how someone feels or reacts to physical pain and (iii) physical pain matters if it impacts participation in meaningful activities.

Conclusions

Adolescents' understanding and beliefs about pain do not always align with current scientific understanding of pain. School-based pain education programmes should target these areas of misalignment. Addressing adolescents' misconceptions about pain through pain education could also create a more supportive school environment for adolescents experiencing pain. Interactive approaches to learning, such as discussions that encourage adolescents to reflect on their experiences of pain, could be a promising avenue for pain education.

Patient or Public Contribution

Two co-authors are part of the study population and contributed to the study design and analysis. Their input ensured the interview guide was appropriate for the target population and provided an adolescent perspective on the findings. They were remunerated for their time in accordance with consumer involvement guidelines.

背景:疼痛在整个生命周期中普遍存在,并造成重大的社会和经济负担。公众经常对疼痛和疼痛管理有误解。尽管如此,没有资源充足的公共卫生举措向公众提供有关疼痛和疼痛管理的信息。青春期是教育公众关于疼痛的好时机。为青少年设计的保健干预措施应反映他们的理解、信念和经验;然而,没有研究探讨这在非临床人群的青少年。本研究旨在探讨青少年对疼痛的理解、体验和信念,为基于学校的疼痛教育模块的开发提供信息。方法:我们对在澳大利亚中学就读的7-10年级(11-16岁)的25名青少年进行了半结构化访谈。访谈通过视频会议软件进行,录音,逐字转录,并使用框架分析进行分析。结果:我们产生了三个主题:(i)身体和心理疼痛是不同的,(ii)心理和环境因素影响人们对身体疼痛的感受或反应,(iii)如果身体疼痛影响参与有意义的活动,它就很重要。结论:青少年对疼痛的理解和信念并不总是与当前对疼痛的科学理解一致。以学校为基础的疼痛教育计划应该针对这些失调的区域。通过疼痛教育解决青少年对疼痛的误解也可以为经历疼痛的青少年创造一个更支持性的学校环境。互动的学习方法,例如鼓励青少年反思他们的疼痛经历的讨论,可能是一个有希望的疼痛教育途径。患者或公众贡献:两位共同作者是研究人群的一部分,并为研究设计和分析做出了贡献。他们的投入确保了访谈指南适合目标人群,并为调查结果提供了青少年的视角。他们的工作时间是按照消费者参与准则支付报酬的。
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引用次数: 0
Supported Decision-Making Interventions in Mental Healthcare: A Systematic Review of Evidence on the Outcomes for People With Mental Ill Health 精神卫生保健中的支持性决策干预:对精神疾病患者结局证据的系统回顾
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-22 DOI: 10.1111/hex.70134
Cathy J. Francis, Michael Hazelton, Rhonda L. Wilson
<div> <section> <h3> Background</h3> <p>Most people with mental ill health want to be involved in decision-making about their care, many mental health professionals now recognise the importance of this (at least <i>in-principle</i>) and the Convention on the Rights of Persons with Disabilities enshrines the ethical imperative to support people in making their own treatment decisions. Nonetheless, there are widespread reports of people with mental ill health being excluded from decision-making about their treatment <i>in practice</i>.</p> </section> <section> <h3> Objectives</h3> <p>We conducted a systematic review of quantitative, qualitative and mixed method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning. We sought to consolidate and understand the evidence on the outcomes of shared and supported decision-making for people with mental ill health.</p> </section> <section> <h3> Methods</h3> <p>Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews.</p> </section> <section> <h3> Results</h3> <p>There was evidence relating to the effects of these interventions on a range of outcomes for people with mental ill health, including on: suicidal crisis, symptoms, recovery, hospital admissions, treatment engagement and on the use of coercion by health professionals. There is favourable evidence for these types of interventions in improving some outcomes for people with mental ill health, more so than treatment-as-usual. For other outcomes, the evidence is preliminary but promising. Some areas for caution are also identified.</p> </section> <section> <h3> Conclusions</h3> <p>The review indicates that when the involvement of people with mental ill health in treatment planning is supported, there can be improved outcomes for their health and care. Areas for future research are highlighted.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at t
背景:大多数患有精神疾病的人希望参与他们的护理决策,许多精神卫生专业人员现在认识到这一点的重要性(至少在原则上),《残疾人权利公约》规定了支持人们自己做出治疗决定的道德责任。然而,有广泛的报告称,精神疾病患者被排除在实际治疗决策之外。目的:我们对干预措施的定量、定性和混合方法研究进行了系统回顾,以提高精神卫生服务使用者参与治疗计划的机会。我们试图巩固和理解关于精神疾病患者共同和支持决策结果的证据。方法:检索7个数据库,筛选5137篇文献。在2008年至2023年10月期间发表的以英文发表的关于成人服务使用者干预的文章被纳入。纳入的140篇文章中的证据是根据JBI关于混合方法系统评价的指南合成的。结果:有证据表明,这些干预措施对精神疾病患者的一系列结果产生了影响,包括:自杀危机、症状、康复、住院、接受治疗以及卫生专业人员使用胁迫手段。有有利的证据表明,这些类型的干预措施在改善精神疾病患者的某些结果方面,比常规治疗效果更好。至于其他结果,证据是初步的,但很有希望。还确定了一些需要注意的领域。结论:本综述表明,当支持精神疾病患者参与治疗计划时,可以改善他们的健康和护理结果。强调了未来的研究领域。患者或公众贡献:本系统评价在所有阶段均由具有精神卫生服务使用经验的研究人员指导,该研究人员不希望在此时被确认。这些发现可能会让组织、研究人员和从业人员了解实施支持性决策的好处,让精神疾病患者更多地参与到他们的医疗保健中来。
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引用次数: 0
Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study 将有生活经验的人纳入电子健康记录数据库研究,从CHOOSE研究中反思和学习。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-18 DOI: 10.1111/hex.70131
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
<div> <section> <h3> Background</h3> <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> </section> <section> <h3> Objectives</h3> <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> </section> <section> <h3> Methods</h3> <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> </section> <section> <h3> Results</h3> <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> </section> <section> <h3> Conclusions</h3> <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> </section>
背景:患者和公众的参与和参与(PPIE)是健康研究不可或缺的一部分。在卫生研究中,报告PPIE的方法和影响越来越普遍。然而,在使用大型常规收集的电子健康记录数据集的研究中报告PPIE的情况并不常见。轶事证据表明,参与这种研究背景更具挑战性,对研究过程产生有意义影响的机会较少。目的:本文报告了临床实践研究数据链(CPRD)研究的参与方法,并批判性地反思了使用英国初级保健电子健康记录数据集进行研究时涉及年轻人、父母和照顾者的过程和影响。方法:选择研究使用CPRD调查COVID-19大流行期间儿童和年轻人(1-24岁)的心理健康诊断。该研究由生活经验咨询小组(LEAP)提供信息,该小组由13名成员组成,其中包括8名有精神健康困难生活经历的年轻人(13-25岁)和5名父母/照顾者,并由项目合作伙伴,心理健康研究慈善机构McPinR基金会促进参与活动。我们在本文中对这一过程进行了反思。结果:让有生活经验的人参与这项研究的主要好处包括理解和背景化研究结果,并确保他们专注于改变年轻人的生活。挑战包括人口普查数据的固定性质,它没有捕捉到有生活经验的人认为重要的所有信息。研究人员表示,PPIE活动的时间有限,尽管McPin的同事组织和促进了在线会议,并在会议期间和会议间隙为年轻人、父母和照顾者提供了支持。结论:本文描述了患者和公众参与电子健康记录数据库研究的方法。与年轻人、照顾者和其他利益攸关方合作需要充足的时间和资源。我们还强调适当的培训和支持的重要性,以及对PPIE参与的局限性保持透明。患者或公众贡献:CHOOSE LEAP的三名成员参与了本文的构思和写作。
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引用次数: 0
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 临床预测模型在全科医生中的价值:一项探讨抑郁症患者和全科医生观点的定性研究。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-18 DOI: 10.1111/hex.70059
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
<div> <section> <h3> Introduction</h3> <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> </section> <section> <h3> Methods</h3> <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> </section> <section> <h3> Results</h3> <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> </section> <section> <h3> Conclusion</h3> <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> </section> <section> <h3> Patient or Public Contribution</h3> <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>
引言:预测模型越来越多地被用于指导初级保健的临床决策。在初级保健中,缺乏关于患者和全科医生(gp)对其使用和实施的看法的证据。我们的目的是更好地了解全科医生和有抑郁症生活经验的人在使用预测模型和初级保健风险沟通方面的观点。方法:采用定性方法。通过对23名抑郁症患者和22名全科医生进行半结构化访谈,在6个月(2022年4月至10月)的时间里生成了数据。一个多学科研究小组和患者咨询小组参与了整个研究。采用主题分析法对数据进行归纳分析。结果:全科医生描述,只有当模型被认为是有用的(例如,因为它们有助于解决一个重要的临床问题),或者全科医生觉得有必要使用预测模型来实现财务或合同目标时,他们才会在咨询中使用预测模型。这两种情况并不是相互排斥的,但如果两个标准都不满足,则模型不太可能在实践中使用。有抑郁症生活经验的人和全科医生报告说,模型输出的交流应该包括风险类别、数字信息和可视化的组合,并针对所涉及的个体患者进行量身定制的讨论。人们认为,心理健康状况下的风险预测比身体健康状况下的风险预测更具挑战性。结论:临床预测模型在实践中使用,但在研究开发阶段必须考虑如何将结果呈现并与患者讨论。在开发或实施临床预测模型时,建议有意义的、深入的公众和患者参与和参与。患者或公众贡献:我们采用嵌入式咨询和协作/共同生产相结合的方法来促进公众和患者参与本研究。一个由有抑郁经历的人组成的患者咨询小组从研究构思开始,参与研究设计、参与者招募、结果解释和传播(包括准备本手稿)。
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引用次数: 0
Consensus on the Structure and Content of Birth Plans: A Modified Delphi Study 生育计划结构与内容的共识:修正德尔菲研究。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-18 DOI: 10.1111/hex.70124
Françoise Vendittelli, Lucie Adalid, Violaine Peyronnet, Sophie Guillaume, Nathalie Piquée, Aurore Viard-Cretat, Catherine Crenn-Hébert, Olivier Rivière, Candy Guiguet-Auclair, Study Group

Background

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.

Methods

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.

Results

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.

Conclusion

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.

Patient or Public Contribution

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.

背景:和许多其他国家一样,法国很少有孕妇写生育计划。文献强调生育计划内容的异质性,这限制了评估生育计划对妇女分娩经历影响的效用。本研究旨在获得法国全国对生育计划的结构和内容的共识。方法:成立多学科指导委员会。通过电子修正德尔福研究,为2022年11月至2023年6月期间的生育计划制定结构和内容。在三轮德尔菲协商一致的过程中,包括围产期保健专业人员和用户代表在内的小组成员被要求单独和独立地评价每个拟议的生育计划的分段和分节制定的适当性。一个外部委员会评估了最终生育计划的序言和内容的可理解性。结果:指导委员会提出了103个与生育计划所涵盖的项目相对应的配方,分为8个部分和30个小节,供德尔菲轮评估。第一轮由42名小组成员(主要是助产士)完成,第二轮由39名小组成员完成,第三轮由36名小组成员完成。最后,指导委员会在经过外部委员会21名成员的审查后,批准了结构化生育计划的最终组成部分,包括8个科和19个小科。结论:法国国家德尔菲程序,经过三轮和外部委员会的验证,对生育计划的8个科19个亚科的结构和内容达成了共识。患者或公众贡献:用户代表作为专家被纳入德尔菲轮,并在外部委员会批准结构化生育计划的最终版本。
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引用次数: 0
Factors Influencing the Oral Health Behaviours of Autistic Children and Young People: A Qualitative Study 影响自闭症儿童及青少年口腔健康行为的因素:一项定性研究。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-17 DOI: 10.1111/hex.70130
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.

背景:儿童期口腔健康状况不佳可引起疼痛,影响生活质量,并对成年期口腔健康有显著影响。自闭症儿童和青少年(CYP)的OH水平不平等,患蛀牙和牙龈疾病的风险高于神经正常的CYP。目的:从ACYP、其父母/照护者和牙科卫生专业人员的角度,为影响ACYP OH行为的因素提供证据和见解。方法:对英格兰西南部的CYP、家长/照顾者和dhp进行半结构化的在线或面对面访谈。结果:共访谈5 ~ 18岁青少年19名、家长/照顾者20名、家庭护理人员16名。确定的主题如下:感官敏感性和饮食;牙刷“战斗”;在一个神经正常的世界中应对日常生活的压力;对自闭症的认识和对良好OH的挑战的理解;对父母照顾孩子OH的影响;青少年及家长/照顾者难以获得健康护理支援;什么是“好的支持”?结论:需要提高dhp、卫生和社会保健专业人员对自闭症的认识以及CYP面临的OH挑战。为青少年及其父母/照顾者提供早期支持、策略和资源,有助于建立积极的家庭护理行为。公众贡献:研究团队在这个项目上与自闭症社区的成员密切合作。在这个项目中使用的方法是与一个研究咨询小组一起开发的,该小组包括四名ACYP(9-17岁)和他们的父母。该队亦与青年会青年俱乐部的10至17岁成员合作。所有的研究文件和资料都是共同制作的。咨询小组成员(T.V.和I.V.)对研究结果的解释和本手稿的撰写做出了贡献。
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引用次数: 0
Causes, Solutions and Health Inequalities: Comparing Perspectives of Professional Stakeholders and Community Participants Experiencing Low Income and Poor Health in London 原因、解决方案和健康不平等:比较专业利益相关者与伦敦低收入和健康状况不佳社区参与者的观点。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-17 DOI: 10.1111/hex.70128
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.

背景:与公众接触可以影响政策决定,尤其是对更激进的政策变革产生影响。虽然已有研究探讨了公众对健康不平等原因的看法,但关于如何解决英国健康不平等问题的研究却少得多。尽管研究强调 "生活经验",但目前还没有研究关注健康状况极差的个人如何看待健康不平等的原因和解决方案:方法:采用 Q 方法来识别和描述低收入社区中存在的关于健康不平等的原因和解决方案的共同观点。来自伦敦的低收入和健康状况不佳的社区参与者(20 人)和专业利益相关者(20 人)根据自己的观点,将 34 个 "原因 "和 39 个 "解决方案 "陈述按准正态网格排序。因子分析确定了 "原因 "和 "解决方案 "的因子:结果:分析得出了 "原因 "和 "解决方案 "的三因素解决方案。原因 "包括 (i) "系统性不平等和贫困",(ii) "被忽视和边缘化社区",(iii) "不稳定、长期压力和绝望"。解决方案 "是:(i) "满足基本需求,提供发展机会",(ii) "增强个人控制能力",(iii) "支持健康选择"。没有专业利益相关者赞同 "被忽视和边缘化社区",而至少有一名社区参与者或专业利益相关者赞同所有其他因素:结果支持公众对健康不平等的原因有相对深入的了解这一观点,并有助于挑战政策参与者的假设,即非专业公众不认识和不了解应对健康不平等的更上游的方法:患者或公众的贡献:公众为 Q 研究的设计做出了贡献。对社区参与者进行的调查和访谈为声明集的制定提供了信息,声明集还在社区参与者中进行了试点,并根据反馈意见最终定稿。
{"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}
引用次数: 0
Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services 让知识使用者参与医疗服务研究:复发性流产服务国家评估的集体反思与学习》(Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services)。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-16 DOI: 10.1111/hex.70125
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
导言:让知识使用者参与研究有助于将证据转化为政策和实践。如何以最佳方式让各类知识使用者(包括患者和公众参与贡献者)参与研究并为其提供支持是一个已确定的知识缺口。我们对复发性流产护理进行了全国性评估,并得到了研究咨询小组(于 2020 年 3 月召集)的支持,该小组由一系列知识使用者组成,包括家长代言人和参与管理/提供服务的人员。该小组召开了九次虚拟会议,并在此基础上就整个项目的各种研究活动积极开展合作。在本文中,我们将分享我们对这些参与工作的集体评估所得出的见解:我们利用项目期间的记录来描述参与活动和经历。顾问组成员参与了一项电子调查,以评估他们在两个时间点(2021 年 2 月和 2022 年 5 月)的参与体验;我们对结果进行了描述性分析。2022 年 5 月,我们举办了一次由研究小组和顾问小组组成的虚拟世界咖啡馆,探讨项目内的参与活动哪些方面行之有效,哪些方面可以改进;我们对这些数据进行了专题分析:对两轮调查的答复都是积极的,人们报告说:他们有能力讨论研究问题、为研究做出贡献、表达自己的观点;感觉自己作为合作伙伴很有价值;他们可以为研究带来自己的想法和价值观;认为自己有可能因为参与研究而获得地位、专业知识或信誉。从 "文字咖啡馆 "讨论中得出的主题突出表明,结构空间和关系空间决定了参与的可及性和体验:成员们报告了积极有益的体验,对研究过程产生了明显的影响,但也强调了研究方案的可行性和范围问题,以及在依赖临床专业知识的方面自主参与所面临的挑战。我们的分析强化了参与的关系性优先于工具性或技术性。我们需要切合实际的研究方案,为知识使用者不断发展的研究性质留出时间和空间,并为促进有意义的参与提供机构和资金支持:患者或公众的贡献:有过复发性流产/妊娠损失经历的人作为 RE:CURRENT 研究咨询小组的成员参与了此次评估,对评估方法、评估活动、结果和见解的解释和报告做出了贡献。
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引用次数: 0
The Use of Arts-Based Methods to Enhance Patient Engagement in Health Research 使用基于艺术的方法加强患者对健康研究的参与。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-16 DOI: 10.1111/hex.70127
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。
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引用次数: 0
Exploring Different Sampling Strategies: A Description of Our Success in Reaching Hard-to-Reach Turkish and Moroccan Immigrant Women in The Netherlands 探索不同的抽样策略:描述我们在荷兰成功接触到难以接触的土耳其和摩洛哥移民妇女。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-12-15 DOI: 10.1111/hex.70105
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。
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Health Expectations
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