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‘So Let's Go On Like This?’—Shared Decision-Making and the Use of Outcome Information in Routine Care Management for People With Multiple Sclerosis 那我们就这样继续吧?"--多发性硬化症患者日常护理管理中的共同决策和结果信息的使用。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-24 DOI: 10.1111/hex.70009
Olga C. Damman, Laxsini Murugesu, Vincent de Groot, Brigit A. de Jong

Introduction

This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic.

Methods

This qualitative study used the following: (a) observations of clinical encounters (N = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (N = 17) and (c) interviews with those HCPs (N = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis.

Results

Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patients after signalling and discussing ‘problems’. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients' preferences, especially related to patients' experiences and priorities.

Conclusions

Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices were not explicitly mentioned or discussed. However, discussions about patients' experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed.

Patient or Public Contribution

People with MS contributed as research participants and provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS.

导言:本研究旨在调查在一家学术门诊中,如何在多发性硬化症(MS)患者的日常护理管理中采用共同决策(SDM)和使用不同类型的结果信息:这项定性研究采用了以下方法:(方法:这项定性研究采用了以下方法:(a)观察患者与医护人员(HCPs)之间的临床接触(23 例);(b)采访这些患者(17 例);(c)采访这些 HCPs(7 例)。医护人员在研究前未接受过 SDM 培训。录音均按字面意思转录。采用定性主题分析法对转录内容进行分析:除了个人层面的临床结果信息(如核磁共振成像或实验室结果)外,几乎不与患者讨论结果信息。临床结果信息的使用并不会自动导致 SDM 过程。医护人员倾向于在提示和讨论 "问题 "后,向患者隐含地提出选择。在访谈中,患者表示他们倾向于同意保健医生提出的建议,并倾向于不对治疗计划做太大的改动。不过,他们也强调了了解现有方案利弊的重要性。我们观察到了关于患者偏好的多次讨论,尤其是与患者的经历和优先事项有关的讨论:总体而言,在对多发性硬化症患者的常规护理管理中,似乎并未实施 SDM 和使用不同类型的结果信息,这主要是因为选择并未被明确提及或讨论。不过,有关患者经历和优先事项的讨论确实存在。患者或公众的贡献:多发性硬化症患者作为研究参与者,在访谈中向我们提供了他们的经验。此外,两个患者组织的代表通过审查多发性硬化症患者的访谈协议为本研究做出了贡献。
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引用次数: 0
The Dilemmas and Opportunities of Co-Creating Health Interventions to Fit Local Contexts: An Ethnographic Study on the Adaptation of Clinical Guidelines in Tanzania 共同创造卫生干预措施以适应当地环境的困境与机遇:坦桑尼亚临床指南改编的人种学研究》。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-24 DOI: 10.1111/hex.70073
Haika Osaki, Morten Skovdal, Jane Brandt Sørensen, Nanna Maaløe, Natasha Housseine, Brenda Sequeira Dmello, Columba Mbekenga
<div> <section> <h3> Introduction</h3> <p>Healthcare providers' role in co-creating health interventions and implementation strategies has evolved significantly, and yet, there is little documentation of this from low-resource settings. This study aims to share the dilemmas of engaging healthcare providers in co-creating locally adapted clinical guidelines for maternity facilities in Dar es Salaam, Tanzania, and strategies used to address them.</p> </section> <section> <h3> Methods</h3> <p>An ethnographic study explored the co-creation of locally adapted clinical guidelines for childbirth care within five maternity facilities in Dar es Salaam. Participant observations were conducted during 11 co-creation workshops. Six in-depth interviews explored participant experiences. Data were analyzed using Attride-Stirling's thematic network analysis framework.</p> </section> <section> <h3> Results</h3> <p>The analysis revealed four themes representing dilemmas in the co-creation process and strategies to improve co-creation: (i) navigating diverse contexts: adapting a single set of guidelines to various, diverse facilities was challenging; this was addressed through engaging in dialogue and flexibility while adjusting care practices. (ii) Competing knowledge systems and sources: differing knowledge sources between researchers and healthcare providers challenged discussions on recommended practices. However, validating scientific recommendations with practical care experience in this context helped bridge this gap. (iii) Fostering meaningful participation: participation was time-consuming for some. However, early stakeholder engagement and facility-led participant selection facilitated the meaningful involvement of healthcare providers. (iv) Power imbalances: power dynamics influenced the co-creation process; involving stakeholders in planning and co-facilitating workshops helped mitigate these imbalances and encourage more equal participation.</p> </section> <section> <h3> Conclusion</h3> <p>Navigating contextual variation, differences in knowledge systems, meaningful participation and power dynamics were key challenges in the co-creation process. However, reflexivity, open and honest dialogue with stakeholders and early engagement enhanced the co-creation process. Co-creating locally adapted clinical guidelines with frontline healthcare workers and scientific experts is essential for feasibility and safety. Further research is needed to explore context specificity, decision-making and the efficacy of co-creation in low-resource settings.</p>
导言:医疗服务提供者在共同制定医疗干预措施和实施策略方面的作用已经有了很大的发展,但在资源匮乏的环境中,这方面的文献却很少。本研究旨在分享坦桑尼亚达累斯萨拉姆市的医疗服务提供者在共同创建适合当地情况的产科临床指南过程中遇到的困境,以及解决这些困境的策略:一项人种学研究探讨了在达累斯萨拉姆的五家妇产机构中共同创建适应当地情况的分娩护理临床指南的情况。在 11 次共同创建研讨会期间对参与者进行了观察。六次深入访谈探讨了参与者的经验。采用 Attride-Stirling 的主题网络分析框架对数据进行了分析:分析揭示了四个主题,分别代表了共同创造过程中的困境和改进共同创造的策略:(i) 在不同的环境中游刃有余:将一套单一的指导方针适用于各种不同的设施具有挑战性;在调整护理实践的同时,通过参与对话和灵活性来解决这一问题。(ii) 相互竞争的知识体系和来源:研究人员和医疗服务提供者之间不同的知识 来源对有关推荐做法的讨论提出了挑战。然而,在这种情况下,以实际护理经验验证科学建议有助于弥合这一差距。(iii) 促进有意义的参与:对一些人来说,参与很费时间。然而,利益相关者的早期参与和由医疗机构主导的参与者选择促进了医疗服务提供者的有意义参与。(iv) 权力失衡:权力动态影响了共同创造过程;让利益相关者参与规划和共同主持研讨会有助于缓解这些失衡,鼓励更平等的参与:结论:在共同创造过程中,应对环境变化、知识体系差异、有意义的参与和权力动态是主要挑战。然而,反思性、与利益相关者进行开诚布公的对话以及早期参与都能促进共创过程。与一线医护人员和科学专家共同创建适应当地情况的临床指南对于可行性和安全性至关重要。需要进一步开展研究,探讨在低资源环境下共同创建的具体情况、决策和功效:患者或公众的贡献:参与共同创造过程的五家妇产机构的医护人员和卫生管理人员积极参与了本研究,他们同意就参与过程中的体验接受访谈:本研究是 PartoMa 项目的子研究。PartoMa 是一项注册临床试验,试验注册号为 NCT04685668。PartoMa 的初始试验注册日期为 2020 年 12 月 28 日。
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引用次数: 0
The Safe Environment for Every Kid Model in the Swedish Child Health Services: Adoption and Introduction in a Healthcare Region 瑞典儿童健康服务机构的 "每个孩子的安全环境模式":在医疗保健地区的采用和引入。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-23 DOI: 10.1111/hex.70078
Marie Golsäter, Ann-Christine Andersson

Background

Early support for children and families in need can improve children's health and development. In a Swedish region, a new working model called Safe Environment for Every Kid (SEEK) was introduced in the Child Health Services to facilitate the early identification of psychosocial risk factors.

Objective

The aim of this study was to describe the adoption and introduction of the SEEK model in the Child Health Services of Region Jönköping County.

Methods

Quantitative data were analysed using descriptive statistics, whereas qualitative data were analysed separately by a thematic approach. The results were then interpreted together with documents (including CHS management meeting notes and documents describing planning and training sessions) using an exploratory mixed-methods approach to give a comprehensive description of the adoption and introduction of the SEEK model.

Results

The results show that the SEEK model improved coordination and collaboration, which led to better integrated care for children and families. The structure was regarded as supportive when introducing the SEEK model in Child Health Services. The questionnaire, as part of the SEEK model, was used in 88% of possible health visits. The most reported reason for not using it was a lack of time.

Conclusions

The desire to make a difference and thereby promote better health and development for children was a crucial factor for the nurses in adopting the SEEK model in their clinical practice. The design using coaches was also appreciated and supported the adoption and introduction of the SEEK model.

Patient or Public Contribution

Parents and healthcare professionals did not contribute to the research process. The results are based on dialogues between CHS nurses and parents after the parents filled in the SEEK questionnaire, providing an understanding of professional relationships when dealing with challenging issues.

背景:为有需要的儿童和家庭提供早期支持可以改善儿童的健康和发展。在瑞典的一个地区,儿童健康服务机构引入了一种名为 "每个孩子的安全环境(SEEK)"的新工作模式,以促进及早识别社会心理风险因素:本研究旨在描述延雪平地区儿童健康服务机构采用和引入 SEEK 模式的情况:采用描述性统计方法对定量数据进行分析,而定性数据则采用专题方法分别进行分析。然后,采用探索性混合方法,将分析结果与文件(包括儿童保健中心管理会议记录以及描述规划和培训课程的文件)一并解读,以全面描述 SEEK 模式的采用和引入情况:结果表明,SEEK 模式改善了协调与合作,从而为儿童和家庭提供了更好的综合护理。在儿童保健服务机构引入 SEEK 模式时,该机构被认为是支持性的。作为 SEEK 模式的一部分,调查问卷在 88% 的可能的健康访视中得到了使用。未使用问卷的最主要原因是缺乏时间:护士们在临床实践中采用 SEEK 模式的一个重要因素是他们希望有所作为,从而促进儿童的健康和发展。使用教练的设计也得到了赞赏,并对采用和引入 SEEK 模式起到了支持作用:患者或公众的贡献:家长和医护人员没有参与研究过程。研究结果是在家长填写了SEEK问卷后,根据CHS护士和家长之间的对话得出的,从而了解了在处理具有挑战性的问题时的专业关系。
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引用次数: 0
An Interactive Vision-Based 3D Augmented Reality System for In-Home Physical Rehabilitation: A Qualitative Inquiry to Inform System Development 用于家庭物理康复的基于视觉的三维增强现实互动系统:为系统开发提供信息的定性调查。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-23 DOI: 10.1111/hex.70020
Afolasade Fakolade, Adriana C. Salvia, Siona Phadke, Manuela Kunz
<div> <section> <h3> Background</h3> <p>Postoperative physical rehabilitation is crucial after total joint replacement (TJR). However, completing the recommended levels of postoperative physical exercise is challenging for many older adults with TJR. Lack of adequate postoperative physical exercise has negative consequences on rehabilitation outcomes. Innovative rehabilitation tools for postoperative physical exercises are needed to ensure successful rehabilitation outcomes among older adults with TJR.</p> </section> <section> <h3> Objective</h3> <p>The aim of this study is to explore key knowledge users' perspectives about how to design an interactive vision-based three-dimensional augmented reality system (3D ARS) to support in-home postoperative physical rehabilitation for older adults with TJR.</p> </section> <section> <h3> Methods</h3> <p>We conducted a qualitative descriptive study involving 11 semi-structured interviews and six focus groups with 42 older adults with TJR and four unrelated family caregivers. Data were analysed using thematic analysis.</p> </section> <section> <h3> Results</h3> <p>Participant insights were grouped into two main themes: (1) dreaming up possibilities and (2) being pragmatic. The first theme captured participants' reflections on the potential utility of a 3D ARS for postoperative physical rehabilitation and features that could be embedded in the 3D ARS to support successful postoperative physical rehabilitation. The second theme captured participants' reflections on practical issues and considerations that could impact access and usage of the 3D ARS.</p> </section> <section> <h3> Conclusion</h3> <p>These findings provide researchers, rehabilitation providers and system developers with the foundations for designing, implementing and evaluating innovative augmented reality tools that support effective in-home physical rehabilitation among older adults with TJR.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Research users (i.e., individuals and organisations invested in and using the research findings) were actively engaged throughout this work. Specifically, a meeting was held between the research team and representatives of an Expert by Experience team (individuals with lived experience), which was established to support the National Research Council's (organisation) Aging in Place programme
背景:全关节置换术(TJR)术后身体康复至关重要。然而,对于许多接受全关节置换术的老年人来说,完成推荐水平的术后体育锻炼具有挑战性。术后缺乏适当的体育锻炼会对康复效果产生负面影响。为确保接受 TJR 的老年人获得成功的康复结果,需要创新的术后体育锻炼康复工具:本研究的目的是探索关键知识用户对如何设计基于视觉的交互式三维增强现实系统(3D ARS)的看法,以支持接受 TJR 的老年人的居家术后身体康复:我们进行了一项定性描述性研究,其中包括 11 次半结构式访谈和 6 次焦点小组讨论,访谈对象为 42 名患有 TJR 的老年人和 4 名无亲属关系的家庭护理人员。采用主题分析法对数据进行分析:参与者的见解分为两大主题:(1) 梦想的可能性和 (2) 务实。第一个主题反映了参与者对 3D ARS 在术后物理康复中的潜在作用的思考,以及 3D ARS 可以嵌入哪些功能来支持成功的术后物理康复。第二个主题反映了参与者对可能影响 3D ARS 获取和使用的实际问题和考虑因素的思考:这些研究结果为研究人员、康复服务提供者和系统开发人员提供了设计、实施和评估创新型增强现实工具的基础,这些工具可支持接受过全麻术后康复的老年人进行有效的居家身体康复:研究用户(即投资和使用研究成果的个人和组织)积极参与了整个研究工作。具体而言,研究团队与 "体验专家 "团队(具有生活经验的人)的代表举行了一次会议,该团队是为支持国家研究委员会(组织)的 "居家养老 "计划而成立的。在这次会议上,为接受 TJR 的老年人术后身体康复开发和评估 ARS 的想法得到了支持。研究用户有机会审查了当前的研究方案,并对研究设计提出了反馈意见,为最大限度地提高我们的研究结果与加拿大国家研究理事会的 "居家养老 "计划的相关性和实用性提供了指导。研究用户为参与者招募工作和访谈指南的制定做出了贡献。两位经验专家还同意加入这项多阶段研究的顾问小组,支持研究用户积极参与并在知识创造和实施过程中发出自己的声音。这些专家审查了当前研究结果的简要报告,并继续指导如何利用研究结果为下一阶段的多阶段研究提供信息。
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引用次数: 0
Perceived Impact of Healthcare Relationships and Interactions on Parental Experiences of Prenatal Diagnosis and Termination of Pregnancy for Foetal Anomaly on the Island of Ireland 医疗保健关系和互动对爱尔兰岛因胎儿异常而进行产前诊断和终止妊娠的父母经历的影响。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-20 DOI: 10.1111/hex.70068
Suzanne Heaney, Mark Tomlinson, Áine Aventin

Objective

The aim of this study was to explore parents' experiences of their relationships and interactions with healthcare professionals (HCPs) during care related to prenatal diagnosis and termination of pregnancy for foetal anomaly (TOPFA).

Methods

A qualitative approach was used. Participants included 33 parents (23 women and 10 men) from Northern Ireland (n = 11) and Ireland (n = 22) who had a TOPFA. Data collection methods included semi-structured interviews and written narrative accounts. Data were analysed using thematic analysis.

Results

Findings confirmed that TOPFA was a traumatic, life-altering experience for parents, impacting their health and well-being. The actions, behaviours and words of HCPs impacted how parents perceived and interpreted their healthcare experiences and their access to services and supports. In relation to this, five themes are presented: (1) the importance of compassionate and non-judgemental care, (2) the value of effective information and communication, (3) the desire for compassionate care for baby and facilitation of memory making, (4) the need for continuity of care and (5) parents' experiences of healthcare relationships during times of legislative change.

Conclusion

This research reveals the important role HCPs play in helping parents cope with prenatal testing and TOPFA. Parents who had a positive relationship with an HCP, in which information was communicated effectively and compassionate and non-judgmental care was provided, felt more supported and more able to accept and adapt to their loss.

Patient and Public Contribution

An advisory group composed of parents who had experienced TOPFA and HCPs with experience in caring for such families were involved in the study from the outset, contributing to the design and development of data collection materials, interpretation of the findings and design of dissemination materials.

研究目的本研究旨在探讨父母在产前诊断和因胎儿异常终止妊娠(TOPFA)相关护理过程中与医疗保健专业人员(HCPs)的关系和互动经验:采用定性方法。参与者包括来自北爱尔兰(11 人)和爱尔兰(22 人)的 33 名接受过 TOPFA 的父母(23 名女性和 10 名男性)。数据收集方法包括半结构化访谈和书面叙述。采用主题分析法对数据进行分析:研究结果证实,TOPFA 对父母来说是一次创伤性的、改变生活的经历,影响了他们的健康和幸福。医疗保健人员的行动、行为和言语影响了家长对其医疗保健经历以及获得服务和支持的看法和解释。为此,研究提出了五个主题:(1) 同情和非评判性护理的重要性;(2) 有效信息和沟通的价值;(3) 对婴儿的同情护理和促进记忆形成的愿望;(4) 护理连续性的需要;(5) 立法变革时期父母对医疗保健关系的体验:这项研究揭示了医疗保健人员在帮助父母应对产前检查和 TOPFA 方面所发挥的重要作用。与保健医生保持良好关系的父母,在有效沟通信息、提供同情和非评判性护理的过程中,会感到更多支持,更能接受和适应他们的损失:一个由经历过 TOPFA 的家长和有照顾这类家庭经验的保健医生组成的咨询小组从一开始就参与了这项研究,为设计和开发数据收集材料、解释研究结果和设计传播材料做出了贡献。
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引用次数: 0
Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness: Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial 患者和公众参与评估无家可归者综合护理的研究:PHOENIx 社区药房试点随机对照试验结果》。
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-18 DOI: 10.1111/hex.70070
Andrew McPherson, Vibhu Paudyal, Richard Lowrie, Helena Heath, Jane Moir, Natalie Allen, Nigel Barnes, Hugh Hill, Adnan Araf, Cian Lombard, Steven Ross, Sarah Tearne, Parbir Jagpal, Versha Cheed, Shabana Akhtar, George Provan, Andrea Williamson, Frances S. Mair
<div> <section> <h3> Introduction</h3> <p>There is a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH.</p> </section> <section> <h3> Methods</h3> <p>Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF).</p> </section> <section> <h3> Results</h3> <p>In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging.</p> </section> <section> <h3> Conclusion</h3> <p>People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This study reports findings and learning relevant to involvement of people with li
导言:关于无家可归问题研究中的患者和公众参与 (PPI),尤其是让有无家可归经历和生活经验的人作为专家顾问直接参与研究的研究很少,对其了解也很有限。我们旨在报告生活体验顾问小组(LEAP)会议和患者与公众参与(PPI)活动的成果和反思,这些会议和活动是在一项试点随机对照试验(RCT)的整个研究生命周期中举行的,重点是评估为无家可归者提供的综合健康和实际支持:社区药房无家可归者外展参与非医疗独立处方 Rx(PHOENIx 社区药房 RCT)是一项针对到社区药房就诊的无家可归者的综合健康和社会关怀干预措施。干预措施包括每周由药剂师开具处方,并由第三部门支持人员提供长达 6 个月的支持。在整个研究过程中开展的 PPI 活动均有记录,包括 LEAP 会议的成果。结果报告遵循《患者和公众参与报告指南 2 简表》(GRIPP2-SF):LEAP共招募了17名成员;举行了六次会议(三次在两个研究地点举行)。此外,无家可归者第三部门组织的工作人员作为研究的共同申请者和试验指导委员会的核心成员,也为公众参与提供了意见。这些公众参与活动共同帮助制定了研究方案、设计了研究材料、进行了数据分析并编写了宣传材料。LEAP 小组成员通过他们的经验和专业知识为干预措施的实施和完善提供了宝贵的意见。尽管一些 LEAP 小组成员提供了纵向意见,但确保重复参加预先计划的会议仍具有挑战性:结论:面临社会排斥和边缘化的人可以作为平等的合作伙伴,在共同设计和实施旨在改善其健康和福祉的干预措施方面提供非常有价值的意见。灵活的成员资格以及寻求和采纳建议的灵活方法可以提供务实的方法,最大限度地减少继续参与研究的障碍:本研究报告了与无家可归者作为顾问参与研究相关的发现和学习。对于研究人员来说,重要的是要提供不固定的成员资格,并使用多种方法来听取有生活经验的成员的意见,因为传统的公众参与方法可能不足以确保包容性。来自第三部门组织的工作人员和志愿者是重要的PPI合作伙伴,他们带来了基于一线服务提供的经验,通常是遭遇严重和多重不利处境的人们的第一求助渠道:试验注册:ISRCTN88146807。
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引用次数: 0
HIV Pre-Exposure Prophylaxis (PrEP) Users' Experiences of PrEP Access, Sexual Behaviour, and Well-Being During the COVID-19 Pandemic: A Welsh Qualitative Study 艾滋病毒暴露前预防疗法 (PrEP) 使用者在 COVID-19 大流行期间对 PrEP 获取、性行为和福祉的体验:威尔士定性研究
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-17 DOI: 10.1111/hex.70064
Zahraa Khammas, David Gillespie, Adam Dale Newman Williams, Jane Nicholls, Fiona Wood

Background

HIV Pre-Exposure Prophylaxis (PrEP) has been available in Wales since 2017. The coronavirus disease (COVID-19) pandemic impacted UK sexual health services, leading to a reduction in service provision. There is a lack of research on the experiences of PrEP users during this time.

Objective

We aimed to explore the experiences of PrEP users in Wales following the introduction of COVID-19 pandemic measures.

Methods

We conducted a secondary data analysis of two prior interview studies (DO-PrEP and UPrEP). Data collection was undertaken between May 2020 and February 2021 using remote interviewing. Semi-structured interviews were conducted. Participants were ≥18 years of age, residents of Wales, current or previous PrEP users, and men who have sex with men (MSM). Reflexive thematic analysis was conducted.

Results

A total of 32 interviews were included in the analysis. Themes include the following: (1) PrEP use during COVID-19, (2) sexual behaviour and relationship changes following COVID-19 restrictions, (3) NHS service provision during the COVID-19 pandemic, and (4) wider contextual effects of the pandemic. Participants reported a change in PrEP use (pausing or switching to event-based PrEP). Participants reported reduced access to clinics and appointments. Support for changing to event-based PrEP was varied. Social isolation resulted in varied responses to lockdown rules, especially in later lockdowns.

Conclusion

This study provides patient perspectives on the challenges the COVID-19 pandemic posed to PrEP use and access. It offers insights into the broader support needs around PrEP use when an individual's circumstances change. Flexible models of PrEP provision, which can be adapted to the patient's needs, will be essential as PrEP delivery extends into the wider community.

Patient and Public Contribution

Both the DO-PrEP and UPrEP studies received input from various stakeholders in the design of the topic guides for the study; these included public lay members, PrEP users, PrEP providers, and individuals involved with HIV advocacy and policy.

背景 自 2017 年起,威尔士开始提供艾滋病毒暴露前预防疗法 (PrEP)。冠状病毒病(COVID-19)大流行影响了英国的性健康服务,导致服务供应减少。在此期间,缺乏对 PrEP 用户体验的研究。 目标 我们旨在探讨威尔士 PrEP 用户在 COVID-19 大流行措施出台后的经历。 方法 我们对之前的两项访谈研究(DO-PrEP 和 UPrEP)进行了二次数据分析。数据收集工作于 2020 年 5 月至 2021 年 2 月期间通过远程访谈进行。我们进行了半结构化访谈。参与者年龄≥18 岁,为威尔士居民,目前或曾经使用过 PrEP,且为男男性行为者 (MSM)。进行了反思性主题分析。 结果 共有 32 个访谈被纳入分析。主题包括以下内容:(1) COVID-19 期间 PrEP 的使用,(2) COVID-19 限制后性行为和关系的变化,(3) COVID-19 大流行期间 NHS 提供的服务,以及 (4) 大流行的更广泛背景影响。参与者报告了 PrEP 使用情况的变化(暂停或改用基于事件的 PrEP)。参与者报告说,去诊所就诊和预约就诊的机会减少了。对改用基于事件的 PrEP 的支持各不相同。社会隔离导致了对封锁规则的不同反应,尤其是在后来的封锁中。 结论 本研究从患者的角度探讨了 COVID-19 大流行给 PrEP 的使用和获取带来的挑战。研究还深入探讨了在个人情况发生变化时使用 PrEP 所需要的更广泛的支持。随着 PrEP 服务扩展到更广泛的社区,能够适应患者需求的灵活的 PrEP 服务模式将变得至关重要。 患者和公众的贡献 DO-PrEP 和 UPrEP 研究在设计研究主题指南时都听取了不同利益相关者的意见;这些利益相关者包括非专业公众成员、PrEP 使用者、PrEP 提供者以及参与艾滋病宣传和政策制定的个人。
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引用次数: 0
Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project 通过共同设计为癌症患者的照顾者改编技能培养预备课程:iCanSupport 项目
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-17 DOI: 10.1111/hex.70061
Bróna Nic Giolla Easpaig, Bronwyn Newman, Judith Johnson, Ursula M. Sansom-Daly, Lucy Jones, Lukas Hofstätter, Eden G. Robertson, Reema Harrison
<div> <section> <h3> Introduction</h3> <p>Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill-prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence-based intervention to be suitable for carers of people with cancer.</p> </section> <section> <h3> Methods</h3> <p>This study used an exploratory, qualitative design consisting of experienced-based co-design and an in-depth stakeholder engagement strategy. An existing evidence-based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co-design workshops with carers and healthcare professionals (<i>n</i> = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (<i>n</i> = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed.</p> </section> <section> <h3> Results</h3> <p>Major programme developments were guided by three themes that emerged from the co-design workshops: ‘creating value for carers’, ‘multiple contributors to carer distress’ and ‘the need for flexible implementation’. Analysis of the stakeholder consultation data showed that the themes of ‘diversity in carer journeys’ and ‘creating impact for carers’ were key to further tailoring the programme for applicability to practice. An adapted programme called ‘iCanSupport’ resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances.</p> </section> <section> <h3> Conclusion</h3> <p>Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co-design provided a user-centric approach to adapt an existing evidence-based programme. Programme evaluation is required to determine the effectiveness of the co-designed approach in improving carer preparedness among a range of cohorts.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Carers and consumers with lived experience and others involved in supporting consumers made valuable co
导言:医疗服务依赖于照护者为身患癌症的亲人提供照护,但许多照护者往往觉得自己没有做好准备。尽管有许多支持照护者心理健康的计划,但缺乏帮助照护者更好地支持癌症患者的计划。本研究旨在通过调整循证干预措施来满足这一需求,使其适合癌症患者的照顾者。 方法 本研究采用探索性定性设计,包括基于经验的共同设计和利益相关者深度参与策略。通过与癌症患者照护者和医疗保健专业人员(n = 8)的两次共同设计研讨会,对现有的循证计划进行了调整,使其适用于癌症患者照护者。在与澳大利亚各地癌症患者和护理者支持组织的工作人员和消费者成员(n = 16)进行利益相关者咨询的基础上,对最终形成的原型计划进行了改进。对研讨会和会议的记录以及护理者的书面反馈进行了专题分析。 结果 共同设计研讨会产生的三个主题指导了主要计划的发展:为照顾者创造价值"、"造成照顾者痛苦的多种因素 "和 "灵活实施的必要性"。对利益相关者咨询数据的分析表明,"照护者旅程的多样性 "和 "为照护者创造影响 "这两个主题是进一步调整计划使其适用于实践的关键。在这一过程中,一个名为 "iCanSupport "的改编计划应运而生,其主要改编之处在于为照护者提供了更多相关的案例研究场景,以及在获取和参与干预措施方面更大的灵活性,以适应各种照护者的情况。 结论 目前还没有为癌症患者提供照顾者技能培训的项目,但照顾者对这些项目很感兴趣。共同设计提供了一种以用户为中心的方法来调整现有的循证计划。我们需要对该计划进行评估,以确定共同设计的方法在改善不同人群中照顾者的准备情况方面的有效性。 患者或公众的贡献 具有生活经验的照护者和消费者以及其他参与支持消费者的人员为共同设计和完善该计划做出了宝贵的贡献,此外还为本研究的分析和报告提供了持续的指导。
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引用次数: 0
Factors That Influence Access to Medical Assistance in Dying Services: An Integrative Review 影响获得临终医疗协助服务的因素:综合评论
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-17 DOI: 10.1111/hex.70058
Jayne Hewitt, Michael Wilson, Ann Bonner, Melissa J. Bloomer
<div> <section> <h3> Background</h3> <p>In nearly all jurisdictions where it is permitted, Medical Assistance in Dying is situated in a healthcare system. Currently, limited evidence demonstrates how supply and demand factors influence access to Medical Assistance in Dying.</p> </section> <section> <h3> Objective</h3> <p>The aim of this study is to synthesise empirical research from jurisdictions where Medical Assistance in Dying is legal to identify how supply and demand factors influence access for eligible adults.</p> </section> <section> <h3> Method</h3> <p>An integrative review was conducted. CINAHL Complete, PubMed, ProQuest, PsycINFO and Embase databases were systematically searched for studies published between January 1998 and January 2024. Records were independently assessed against inclusion and exclusion criteria. Additional studies were identified by forward and backward citation searching. All studies were assessed for quality. Findings were analysed deductively using an established conceptual framework, and a secondary narrative synthesis was undertaken.</p> </section> <section> <h3> Results</h3> <p>Fifty-eight studies met the inclusion criteria. Most studies (<i>n</i> = 32) reported results related to the supply side, 16 reported on the demand side and 10 reported on both supply and demand dimensions of access. Studies about supply showed that health service policies may obstruct access to Medical Assistance in Dying. For healthcare professionals, the practice entails an additional workload and can create tensions with colleagues. Studies of the demand for Medical Assistance in Dying focused on supporting time-critical decisions, adequate planning and caregiver support.</p> </section> <section> <h3> Conclusion</h3> <p>Access to Medical Assistance in Dying requires the participation of health services and healthcare professionals but is hindered by policies that obstruct access and direct financial and indirect emotional labour costs. Innovative and inclusive models to promote high-quality, compassionate care at the end of life and access to Medical Assistance in Dying should be considered.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Patients, caregivers and service users were involved in many of the studies included in this review, and their experiences and perspectives contributed to the analysis and synthe
背景 在几乎所有允许使用临终医疗协助的司法管辖区,临终医疗协助都位于医疗保健系统中。目前,只有有限的证据表明供需因素如何影响临终医疗协助的使用。 本研究旨在综合临终医疗协助合法的司法管辖区的实证研究,以确定供需因素如何影响符合条件的成年人获得临终医疗协助。 方法 进行综合综述。系统检索了 CINAHL Complete、PubMed、ProQuest、PsycINFO 和 Embase 数据库中 1998 年 1 月至 2024 年 1 月期间发表的研究。根据纳入和排除标准对记录进行独立评估。还通过正向和反向引文检索确定了其他研究。对所有研究进行了质量评估。采用既定的概念框架对研究结果进行演绎分析,并进行二次叙述性综合。 结果 58 项研究符合纳入标准。大多数研究(n = 32)报告了与供应方相关的结果,16 项研究报告了需求方的结果,10 项研究同时报告了获取医疗服务的供应和需求两个方面的结果。有关供应方面的研究表明,医疗服务政策可能会阻碍人们获得临终医疗协助。对于医护专业人员来说,这种做法会带来额外的工作量,并可能造成与同事之间的紧张关系。对临终医疗协助需求的研究侧重于支持时间紧迫的决定、充分的规划和护理人员的支持。 结论 临终医疗协助的获取需要医疗服务和医疗专业人员的参与,但却受到阻碍获取的政策以及直接的经济和间接的情感劳动成本的阻碍。应考虑采用创新性和包容性的模式来促进高质量、富有同情心的临终关怀和临终医疗协助的使用。 患者或公众的贡献 患者、照护者和服务使用者参与了本综述中的许多研究,他们的经验和观点为本综述的分析和总结做出了贡献。
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引用次数: 0
How Readable Is the Information the United Kingdom's Statutory Health and Social Care Professional Regulators Provide for the Public to Engage With Fitness to Practise Processes? 英国法定卫生与社会保健专业监管机构为公众参与执业资格程序提供的信息可读性如何?
IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-16 DOI: 10.1111/hex.70067
Sharif Haider, Louise M. Wallace

Background

The public are an important source of notifications and evidence for the investigation of concerns by regulators of professionals. The website is an important source of information for the public, but the complexity of information presented to engage with the public is unknown.

Objectives

This study explored the readability of information provided for the public to engage with fitness to practise processes by examining the websites of the 13 UK statutory health and social care professional regulators.

Methods

Six readability algorithms were utilised to calculate the readability scores of 180 general and 8 easy-read documents published for the 15 sites of the United Kingdom's 13 health and social care statutory professional regulatory bodies. These tests were the Flesch Kincaid Reading Ease, the Flesch Kincaid Grade Level, the Gunning Fog Score, the Simple Measure of Gobbledygook (SMOG) Index, the Coleman Liau Index and the Automated Readability Index (ARI).

Results

All the fitness to practise documents analysed in this study are written at a level too difficult for most of the general population to read, except one easy-read document. There was also considerable variation in readability across resources for the same regulator, which could be confusing. Regulatory bodies risk excluding a large proportion of UK adults who may want to engage with professional regulatory proceedings.

Conclusions

This is the first comparative analysis of readability conducted independent of the regulators of the fitness to practise website documents of health and social care regulators. The public are a key source of evidence in regulatory proceedings. Regulators could improve public engagement by addressing the complexity of language used.

Public Contribution

Our advisory group of people with lived experience of involvement as members of the public in fitness to practise proceedings discussed the findings and contributed to the recommendations.

背景 公众是专业监管机构调查所关注问题的重要通知和证据来源。网站是公众获取信息的一个重要来源,但为公众提供的信息的复杂程度却不得而知。 目标 本研究通过检查英国 13 家法定医疗和社会护理专业监管机构的网站,探讨为公众提供的信息的可读性,以便公众参与执业资格程序。 方法 使用六种可读性算法来计算英国 13 家医疗与社会护理法定专业监管机构的 15 个网站上发布的 180 份普通文件和 8 份易读文件的可读性得分。这些测试方法分别是弗莱什-金凯德易读性、弗莱什-金凯德等级水平、高宁雾度得分、简单拗口指数 (SMOG) 、科尔曼-廖指数和自动可读性指数 (ARI)。 结果 除一份易读文件外,本研究分析的所有执业资格文件的书写水平对大多数普通人来说都难以阅读。同一监管机构的不同资源在可读性方面也存在很大差异,这可能会造成混淆。监管机构有可能将大部分希望参与专业监管程序的英国成年人排除在外。 结论 这是首次独立于监管机构之外,对卫生和社会医疗监管机构的执业资格网站文件的可读性进行比较分析。公众是监管程序中的重要证据来源。监管机构可以通过解决所用语言的复杂性来提高公众参与度。 公众贡献 我们的咨询小组由在公众参与执业资格程序中具有亲身经历的人士组成,他们对研究结果进行了讨论,并对建议做出了贡献。
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Health Expectations
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