Health Expectations最新文献_第8页

‘Motivating Implicit Chinese to Express Themselves Is the Biggest Barrier’: A Qualitative Study of Chinese Researchers' Perceptions of Barriers and Facilitators to Patient Engagement in Research 激励隐性中国人表达自己是最大的障碍"：中国研究人员对患者参与研究的障碍和促进因素的定性研究》。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-21 DOI: 10.1111/hex.70112

Lin Yang, Yu-xiao Liu, Bi-xia Wang, Meng-jiao Yu, Wei-Wei Bian, Cai-feng Wang, Hong Ruan

Background

Patient Engagement in Research (PER) has demonstrated benefits for patients, researchers and research outcomes. However, China lacks substantial experience in implementing PER. The implementation of PER in China faces unique challenges due to social-cultural differences. This study explores the perspectives of Chinese researchers to identify barriers and facilitators, aiming to guide future PER initiatives and enhance the role of patients in research.

Method

Purposive sampling was employed to recruit clinical researchers with diverse healthcare backgrounds in China. Semi-structured interviews, conducted by a qualified researcher, followed interview guidelines derived from a literature review and pilot study modifications. Thematic analysis was applied using QSR Nvivo 8.0.

Results

A total of 13 participants were included. Five main themes were identified from interview: (1) selection of patients for research engagement, (2) strategies to alleviate the patient burden in implementing PER, (3) strategies to encourage patients for active expression, (4) benefits to attract patient engagement and (5) researcher's preparation.

Conclusion

The cultural trait of ‘reservedness’ in Chinese culture hinders active expression by patients in the research engagement process. Researchers tend to recruit patients with specific characteristics and emphasize the importance of aligning benefits with patient values to motivate engagement. Addressing patient burden is crucial, and researchers should be well-prepared before PER. These findings underscore the necessity of adopting culturally adapted strategies in PER to effectively address specific challenges.

Patient or Public Contribution

The public participated in the interpretation of the interview results, enriching our understanding of the results.

背景：研究中的患者参与（PER）已证明对患者、研究人员和研究成果都有好处。然而，中国缺乏实施 PER 的丰富经验。由于社会文化的差异，在中国实施 PER 面临着独特的挑战。本研究探讨了中国研究人员的观点，以确定障碍和促进因素，旨在指导未来的 PER 计划，并加强患者在研究中的作用：方法：采用有目的的抽样方法，在中国招募具有不同医疗背景的临床研究人员。半结构式访谈由一名合格的研究人员进行，并遵循文献综述和试点研究修改后得出的访谈指南。采用 QSR Nvivo 8.0 进行了主题分析：共有 13 人参加了访谈。从访谈中确定了五大主题：(1) 选择参与研究的患者；(2) 在实施 PER 过程中减轻患者负担的策略；(3) 鼓励患者积极表达的策略；(4) 吸引患者参与的好处；(5) 研究人员的准备工作：结论：中国文化中的 "矜持 "特质阻碍了患者在研究参与过程中的积极表达。研究人员倾向于招募具有特定特征的患者，并强调利益与患者价值观相一致对激励参与的重要性。解决患者负担问题至关重要，研究人员应在 PER 前做好充分准备。这些发现强调了在 PER 中采取适应文化的策略的必要性，以有效应对特定挑战：公众参与了访谈结果的解释，丰富了我们对结果的理解。

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引用次数: 0

‘The Letter Says I May or May Not Be Eligible… It Is a Big Doubt and Frustrating:’ A Qualitative Study on Barriers and Facilitators to Children's Oral Healthcare From the Perspective of Karen Refugee Parents in Victoria 信上说我可能符合条件，也可能不符合条件......这是一个很大的疑问，令人沮丧："从维多利亚州卡伦难民父母的角度看儿童口腔保健的障碍和促进因素的定性研究。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-19 DOI: 10.1111/hex.70110

Sudheer Babu Balla, Jyothi Tadakamadla, Santosh Kumar Tadakamadla

Background

Australia has a longstanding tradition of resettling refugees and individuals in humanitarian need. Among these, the Karen community from Southeast Asia is rapidly growing in Australia. The absence of data on the barriers they face in accessing dental services is concerning. This study explores the barriers and facilitators Karen refugees encounter when seeking oral healthcare for their children in Australia, aiming to understand their experiences.

Methods

Using a qualitative research design with a phenomenological approach, we conducted semi-structured interviews with 23 parents (17 females and 6 males) who had been in Australia for 1–17 years. Each interview, lasting between 35 and 60 min, was audio-recorded and transcribed verbatim. The transcripts were thematically analysed through an inductive, data-driven approach, focusing on open coding and participant-based meanings.

Findings

Nine main themes were identified. At the individual level, cultural practices, parental behaviours and perceptions were the primary barriers. At the organisational level, long waiting lists in the public dental system were significant barriers. Additionally, a lack of knowledge about financial benefits and government support for children's dental care deterred refugees from seeking dental services. The results also highlighted the strengths of support networks, free dental care for children and school-based dental care programmes. Parents reported experiences of inadequate oral healthcare, citing issues such as insufficient cultural sensitivity training among dental service providers, interpreter problems and shortages. These experiences revealed gaps in the provision of oral healthcare services.

Conclusion

When designing tailored oral health promotion programs, all stakeholders must consider the lived experiences of refugees as valuable sources of information.

Patient or Public Contribution

The authors thank the parents and carers from the Karen refugee community for sharing their experiences with the oral healthcare of their children. Recruitment was facilitated by the Karen Organisation of Bendigo and Bendigo Community Health Services. An interpreter from the Karen refugee community assisted in all the interviews.

背景：澳大利亚在重新安置难民和有人道主义需求的个人方面有着悠久的传统。其中，来自东南亚的克伦族正在澳大利亚迅速壮大。有关他们在获得牙科服务时所面临的障碍的数据缺失令人担忧。本研究探讨了克伦族难民在澳大利亚为子女寻求口腔医疗服务时遇到的障碍和促进因素，旨在了解他们的经历：采用现象学方法的定性研究设计，我们对 23 名在澳大利亚居住了 1-17 年的父母（17 名女性和 6 名男性）进行了半结构化访谈。每次访谈持续 35 至 60 分钟，我们对访谈内容进行了录音和逐字记录。通过归纳、数据驱动的方法对记录誊本进行了主题分析，重点是开放式编码和基于参与者的意义：确定了九大主题。在个人层面，文化习俗、家长行为和观念是主要障碍。在组织层面，公共牙科系统冗长的候诊名单是主要障碍。此外，对儿童牙科保健的经济福利和政府支持缺乏了解也阻碍了难民寻求牙科服务。研究结果还强调了支持网络、儿童免费牙科保健和学校牙科保健计划的优势。家长们报告了口腔保健不足的经历，提到的问题包括牙科服务提供者的文化敏感性培训不足、翻译问题和短缺。这些经历揭示了在提供口腔保健服务方面存在的差距：结论：在设计有针对性的口腔健康促进计划时，所有利益相关者都必须将难民的生活经历作为宝贵的信息来源：作者感谢来自克伦族难民社区的父母和照顾者分享了他们在子女口腔保健方面的经验。本迪戈卡伦组织（Karen Organisation of Bendigo）和本迪戈社区卫生服务机构（Bendigo Community Health Services）为招募工作提供了便利。一名来自克伦族难民社区的翻译协助了所有访谈。

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引用次数: 0

Exploring Barriers and Facilitators to Patients and Members of the Public Contributing to Rapid Health Technology Assessments for NICE: A Qualitative Study 探索患者和公众为 NICE 快速健康技术评估做出贡献的障碍和促进因素：定性研究。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-18 DOI: 10.1111/hex.70109

Eugenie Evelynne Johnson, Debbie Smith, Becky Harmston, Emily Hunter, Emma Belilios, Fiona Pearson

<div> <section> <h3> Background</h3> <p>Evidence and External Assessment Groups (EAGs) assist in the National Institute of Health and Care Excellence's Technology Appraisal programme by either critiquing evidence provided by companies on different health technologies, or by carrying out an independent search and evaluation of the published evidence. Historically, there has been little patient and public involvement within the work of EAGs.</p> </section> <section> <h3> Objective</h3> <p>To identify key barriers and facilitators to patient and public involvement in EAG Reports feeding into the National Institute for Health and Care Excellence's Health Technology Appraisal process.</p> </section> <section> <h3> Methods</h3> <p>A primary qualitative study consisting of one-to-one interviews with EAG researchers and focus groups with members of the public. From anonymised transcripts, data were deductively coded using a framework analysis against the Theoretical Domains Framework and translated to the COM-B model. Coding was triangulated through inductive thematic analysis, guided by the principles of Braun and Clarke.</p> </section> <section> <h3> Results</h3> <p>Ten researchers were interviewed and four focus groups with a total of 26 members of the public were undertaken. Both EAG researchers and the public felt they did not have enough knowledge, time and money to be able to embed patient and public involvement; researchers suggested that patient and public involvement might not be relevant to the scope of their Reports. Members of the public highlighted a lack of awareness of the Technology Appraisal process and that jargon may stop them being involved. Both researchers and members of the public said having specific guidance on how to embed patient and public involvement in EAG Reports would be helpful, including guidance on how to write plain language summaries.</p> </section> <section> <h3> Conclusion</h3> <p>The perspectives of both EAG researchers and members of the public suggest work needs to be conducted to produce frameworks for patient and public involvement and plain language summaries within EAG Reports specifically. Additionally, that further awareness-raising of Technology Appraisals and the role of EAGs would help members of the public to contribute effectively to EAG Reports.</p> </section> <section> <h3> Patient or Public Contribution</h3>

背景：证据和外部评估小组（EAGs）协助国家健康与护理卓越研究所（National Institute of Health and Care Excellence）的技术评估计划，对公司提供的不同健康技术的证据进行评论，或对已发表的证据进行独立的搜索和评估。从历史上看，患者和公众很少参与 EAG 的工作：目的：确定患者和公众参与 EAG 报告的主要障碍和促进因素，并将其纳入国家健康与护理卓越研究所的健康技术评估流程：主要定性研究包括对 EAG 研究人员的一对一访谈和对公众成员的焦点小组访谈。根据匿名记录，采用理论领域框架分析法对数据进行演绎编码，并转化为 COM-B 模型。在布劳恩和克拉克原则的指导下，通过归纳主题分析对编码进行了三角测量：对 10 名研究人员进行了访谈，并与共计 26 名公众进行了四次焦点小组讨论。EAG的研究人员和公众都认为他们没有足够的知识、时间和资金来嵌入患者和公众参与；研究人员认为患者和公众参与可能与他们的报告范围无关。公众成员强调，他们对技术评估过程缺乏了解，专业术语可能会阻止他们参与其中。研究人员和公众成员均表示，就如何将患者和公众参与纳入EAG报告提供具体指导将有所帮助，包括指导如何撰写通俗易懂的摘要：东亚组研究人员和公众的观点表明，需要开展工作，制定患者和公众参与的框架，并在东亚组报告中专门使用通俗易懂的语言进行总结。此外，进一步提高对技术评估和EAG作用的认识将有助于公众为EAG报告做出有效贡献：两名公众成员是研究小组的成员，并根据英国公众参与标准对研究的各个阶段进行管理。

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引用次数: 0

Beyond the Queue: Exploring Waiting Practices in the Stories of Patients With Breast Cancer 超越排队：从乳腺癌患者的故事中探索等待的做法。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-17 DOI: 10.1111/hex.70086

Nada Akrouh, Rik Wehrens, Erna Scholtes, Hester van de Bovenkamp

Background

Waiting is an important topic in healthcare debates, mostly discussed in the form of waiting lists and waiting times. In this discourse, the experiential element of waiting stays hidden. Understanding the waiting experiences of patients can help to better understand healthcare waiting practices, which have a large impact on patients.

Methods

We performed a thematic analysis on 12 patients' books of women with breast cancer. We focused on the theme of waiting within these stories, through an abductive analysis.

Results

We identified three themes within the waiting practices of patients with breast cancer: (1) Thickening of time, (2) contaminated time and (3) navigating time. The theme thickening of time highlights waiting moments where time is experienced as moving at a very slow pace with intense emotional impact. The theme of contaminated time highlights the waiting processes as an ongoing component of experiencing illness. The theme of navigating time highlights patients' temporal agency, showing their waiting work in the form of strategies for dealing with practical and emotional aspects of waiting.

Discussion

The waiting experiences of patients provide insights into the burden of waiting, which is partly connected to the way healthcare services are organised and the experience of illness. Understanding these multifaceted experiences of patients helps pinpoint areas for healthcare quality improvement.

Patient or Public Contribution

The choice for the theme and approach of this research, waiting, was developed with a citizen science initiative of collecting patient stories.

背景：等待是医疗保健辩论中的一个重要话题，主要以候诊名单和等待时间的形式进行讨论。在这种讨论中，等待的体验因素被隐藏起来。了解患者的等待经历有助于更好地理解对患者有重大影响的医疗等待做法：我们对 12 本关于乳腺癌女性患者的书籍进行了主题分析。通过归纳分析，我们重点研究了这些故事中的等待主题：结果：我们在乳腺癌患者的等待实践中发现了三个主题：(1) 加厚时间；(2) 污染时间；(3) 驾驭时间。时间加厚 "这一主题强调了在等待过程中，时间以非常缓慢的速度流逝，对患者的情绪产生了强烈的影响。被污染的时间这一主题强调了等待过程是经历疾病的一个持续组成部分。驾驭时间这一主题突出了患者的时间能动性，显示了他们在等待过程中的工作，他们采取了各种策略来处理等待过程中的实际问题和情绪问题：讨论：病人的等待经历让我们了解到等待的负担，这部分与医疗服务的组织方式和疾病体验有关。了解病人这些多方面的经历有助于确定医疗质量改进的领域：本研究的主题和方法 "等待 "是通过收集病人故事的公民科学活动确定的。

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引用次数: 0

Shared Decision-Making and Body Mass Index in Australian Antenatal Care: An Exploratory OPTION12 Evaluation 澳大利亚产前护理中的共同决策和体重指数：探索性 OPTION12 评估。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-17 DOI: 10.1111/hex.70107

Madeline Hawke, Linda Sweet, Julie Considine

Background

Shared decision-making is recommended as a person-centred approach to decision-making in antenatal care. Little is known about the implementation of shared decision-making in antenatal care.

Objective

An exploratory study to understand how shared decision-making is implemented in antenatal clinics and whether body mass index influences maternity clinicians’ use of shared decision-making when providing antenatal care for women.

Methods

Twenty-six antenatal clinic consultations were audio-recorded with maternity clinicians and women with body mass index ≥ 35 kg/m², and a comparison group of women with body mass index 18.5–24.9 kg/m². Data were analysed quantitatively using the OPTION12 scale. Narrative case studies are presented to compare shared decision-making behaviour related to induction of labour.

Results

Twelve clinicians and 26 pregnant women were recruited to the study. The total scores ranged from 0 to 24, with a mean score of 9 and a median of 9.5 indicating low implementation of shared decision-making by clinicians and limited involvement of women in decision-making. No difference was observed in OPTION12 scores in decision-making for women by body mass index.

Conclusion

This study suggests that shared decision-making is limited in the antenatal clinic setting for all women, regardless of body mass index. Further research is required to confirm the findings of this exploratory study.

Patient or Public Contribution

The perspectives of women with body mass index ≥ 35 kg/m² informed many aspects of this study including the language/terminology adopted by researchers. A consumer group reviewed the language used in the study materials, to ensure readability and avoidance of stigmatising terminology.

背景：共同决策是产前护理中一种以人为本的决策方法。但人们对产前护理中共同决策的实施情况知之甚少：一项探索性研究旨在了解产前门诊如何实施共同决策，以及体重指数是否会影响产科临床医生在为产妇提供产前护理时使用共同决策：对产科临床医生和体重指数≥35 kg/m2的产妇以及体重指数为18.5-24.9 kg/m2的产妇进行了26次产前咨询录音。采用 OPTION12 量表对数据进行定量分析。通过叙述性案例研究来比较与引产相关的共同决策行为：研究共招募了 12 名临床医生和 26 名孕妇。总分从 0 分到 24 分不等，平均分为 9 分，中位数为 9.5 分，表明临床医生很少实施共同决策，妇女参与决策的程度有限。根据体重指数的不同，妇女在决策过程中的 OPTION12 得分也没有差异：本研究表明，在产前诊所环境中，无论身体质量指数如何，所有妇女的共同决策都很有限。需要进一步研究来证实这项探索性研究的结果：患者或公众的贡献：体重指数≥ 35 kg/m2 的妇女的观点为本研究提供了许多信息，包括研究人员采用的语言/术语。一个消费者团体对研究材料中使用的语言进行了审查，以确保可读性并避免使用污名化术语。

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引用次数: 0

Consumer Involvement in the Design and Development of Medication Safety Interventions or Services in Primary Care: A Scoping Review 消费者参与基层医疗机构用药安全干预或服务的设计与开发：范围综述》。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-17 DOI: 10.1111/hex.70092

Megan DelDot, Esther Lau, Nicole Rayner, Jean Spinks, Fiona Kelly, Lisa Nissen

<div> <section> <h3> Introduction</h3> <p>Medication-related problems remain a significant burden despite the availability of various interventions and services in primary care. Involving health care consumers to design interventions or services across health disciplines is becoming more widely used as this type of engagement reportedly leads to more accessible, acceptable and sustainable health services and quality of life. We conducted a scoping review to examine when and how consumers have been involved in the design and development of medication safety interventions or services within the primary care.</p> </section> <section> <h3> Methods</h3> <p>We searched five key databases (MEDLINE (EBSCOhost), CINAHL (EBSCOhost), PsycINFO (EBSCOhost), Embase (Elsevier) and Cochrane Library (Wiley)) for relevant articles published up to February 2024. Studies were included if they involved adult consumers (≥ 18 years), their families, carers or the wider community as stakeholders. This review only included studies where the aim was to improve safe and effective medication use, delivered exclusively in primary care. To examine consumer involvement approaches and methods we adapted a framework describing the stages of consumer involvement for the data extraction tool.</p> </section> <section> <h3> Results</h3> <p>Overall, 15 studies were included (comprising 24 articles). Codesign, experience-based codesign, coproduction and participatory action research were commonly used approaches. Meetings, interviews, surveys/questionnaires were commonly used methods. Two studies reported consumer involvement across all stages of the research study, and only one study described the consumer experience of being involved in the research process. The impact of consumer involvement on the effectiveness of these services or interventions was mixed.</p> </section> <section> <h3> Conclusion</h3> <p>The potential benefits of consumer involvement in the design and development of medication safety interventions or services may not have been fully maximised, given that genuine consumer involvement across all stages of the research study appears uncommon. More transparent and consistent reporting around the description of consumers involved, their experience of being involved and overall impact and quality of consumer participation is needed.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This scoping review was undertaken without consumers, patients, service

导言：尽管在初级保健中提供了各种干预措施和服务，但与用药相关的问题仍然是一个沉重的负担。据报道，让医疗保健消费者参与设计跨医疗学科的干预措施或服务正得到越来越广泛的应用，因为这种参与方式能带来更方便、更可接受、更可持续的医疗服务和生活质量。我们进行了一项范围综述，研究消费者何时以及如何参与初级医疗保健中用药安全干预措施或服务的设计和开发：我们检索了五个主要数据库（MEDLINE (EBSCOhost)、CINAHL (EBSCOhost)、PsycINFO (EBSCOhost)、Embase (Elsevier) 和 Cochrane Library (Wiley)）中截至 2024 年 2 月发表的相关文章。如果研究涉及成年消费者（≥ 18 岁）、其家人、照顾者或更广泛的社区利益相关者，则将其纳入研究范围。本综述仅纳入旨在改善安全有效用药的研究，且仅在基层医疗机构开展。为了考察消费者参与的方式和方法，我们在数据提取工具中采用了一个描述消费者参与阶段的框架：共纳入 15 项研究（包括 24 篇文章）。共同设计、基于经验的共同设计、共同生产和参与式行动研究是常用的方法。会议、访谈、调查/问卷是常用的方法。有两项研究报告了消费者参与研究的所有阶段，只有一项研究描述了消费者参与研究过程的体验。消费者参与对这些服务或干预措施效果的影响好坏参半：消费者参与用药安全干预措施或服务的设计与开发的潜在益处可能没有得到充分发挥，因为消费者真正参与研究的所有阶段似乎并不常见。有必要对消费者参与的描述、参与体验以及消费者参与的整体影响和质量进行更加透明和一致的报告：患者或公众的贡献：由于资源所限，本范围界定研究在没有消费者、患者、服务使用者、护理人员或有生活经验者或公众成员参与的情况下进行。本范围界定综述由学者进行并撰写，他们与消费者和利益相关者一起进行了代码设计，并拥有药物相关问题的亲身经历。

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引用次数: 0

Co-Creation in Research: Further Reflections From the ‘Co-Creating Safe Spaces’ Project 研究中的共同创造：共同创造安全空间 "项目的进一步思考。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-15 DOI: 10.1111/hex.70103

Scott J. Fitzpatrick, Heather Lamb, Erin Oldman, Melanie Giugni, Cassandra Chakouch, Alyssa R. Morse, Amelia Gulliver, Erin Stewart, Stride Safe Space and Safe Haven Team, Helen T. Oni, Benn Miller, Bronwen Edwards, Kelly Stewart, Vida Bliokas, Louise A. Ellis, Fiona Shand, Alison L. Calear, Michelle Banfield

Background

Applied research using co-creation methods is rarely described or evaluated in detail. Practical evidence of co-creation processes and collaboration effectiveness is needed to better understand its complex and dynamic nature.

Methods

Using a case study design and survey method, we assessed processes of co-implementation and co-evaluation grounded in our own experiences from the Co-Creating Safe Spaces project. We examine these in the context of a published systematic framework designed to improve clarity about co-creation processes and report on how co-creation was experienced by collaborative partners.

Results

Our study showed the interconnectedness between co-implementation and co-evaluation processes and the importance of aligning research with program processes to ensure it is responsive to emergent local needs and problems. Given relatively low levels of researcher embeddedness across sites, service champions played a pivotal role in data collection. Survey findings indicated strong support for a healthy collaboration with some concerns expressed over individual partner's areas of responsibility and ability to deliver on commitments.

Conclusion

Co-creation can be a very robust approach to translational research but is a complex endeavour. Ongoing reflexivity and attention to relational aspects support genuine collaboration and provide a foundation for addressing challenges.

Patient or Public Contribution

People with lived experience of emotional distress and/or suicidal crisis, including researchers from both academic and non-research backgrounds, service managers, peer workers, carers and advocates, were involved in this research and authored this paper.

背景：使用共同创造方法进行的应用研究很少得到详细描述或评估。为了更好地了解其复杂性和动态性，我们需要有关共同创造过程和合作效果的实际证据：方法：我们采用案例研究设计和调查方法，根据共创安全空间项目中的自身经验，对共同实施和共同评估过程进行了评估。我们在已发布的系统框架内对这些过程进行了研究，该框架旨在提高共同创造过程的清晰度，并报告合作伙伴是如何体验共同创造的：我们的研究表明了共同实施和共同评估过程之间的相互关联性，以及将研究与计划过程相结合以确保研究能够满足当地新出现的需求和问题的重要性。由于研究人员在各项目点的嵌入程度相对较低，服务倡导者在数据收集中发挥了关键作用。调查结果显示，各方大力支持健康的合作，但也有一些人对合作伙伴的责任范围和履行承诺的能力表示担忧：结论：共同创造是一种非常有效的转化研究方法，但也是一项复杂的工作。持续的反思和对关系方面的关注有助于真正的合作，并为应对挑战奠定了基础：有情绪困扰和/或自杀危机亲身经历的人，包括来自学术和非研究背景的研究人员、服务管理人员、同伴工作者、照护者和倡导者，都参与了这项研究并撰写了本文。

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引用次数: 0

Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease 共同设计帕金森病患者自我管理工具包。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-15 DOI: 10.1111/hex.70104

Nathan Davies, Megan Armstrong, Jennifer S. Pigott, Danielle Nimmons, Joy Read, Benjamin Gardner, Bev Maydon, Anette Schrag, Kate Walters

<div> <section> <h3> Background</h3> <p>Parkinson's disease is a complex progressive neurodegenerative disease increasing globally. Self-management interventions have shown promise in improving the quality of life for people with chronic conditions. This paper aims to describe the development processes and the core components of a facilitated self-management toolkit to support people with Parkinson's disease to self-manage their condition.</p> </section> <section> <h3> Methods</h3> <p>An iterative co-design approach was adopted and included the use of systematic reviews, qualitative methods and theory to develop the Live Well with Parkinson's toolkit. A co-design group was established consisting of people with Parkinson's, family carers and health and social care experts to produce and refine an online self-management toolkit to be tested in practice. Five co-design groups were conducted alongside several phases of toolkit development.</p> </section> <section> <h3> Results</h3> <p>An online self-management toolkit, called Live Well with Parkinson's, was developed with core aspects such as tailored information to the individual, a well-being section using an asset-based approach and problem-solving skills to create and maintain goals, symptom review and management sections and a tracker of medication, symptoms and activities/actions. A paper-based alternative version was also created for those who cannot use an online resource. The toolkit is fully manualised and facilitated by six sessions from a ‘supporter’ who is trained in behaviour change techniques. It can be shared with carers and healthcare professionals.</p> </section> <section> <h3> Conclusion</h3> <p>The toolkit is a robust and comprehensive approach to self-management of Parkinson's disease. It is evidenced based, incorporates theory and was developed with people with Parkinson's and experts in the area. The Live Well with Parkinson's toolkit has the potential to be embedded within routine healthcare, aligning with self-management policies.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Author B.M. is our patient and public involvement (PPI) representative and author on this paper. B.M. supports a team of 15 PPI members who have contributed to the development of the toolkit. This involvement has included attending research team and steering group meetings, attending and facilitating co-designed workshops, reviewing all the toolkit information before approval and sup

背景：帕金森病是一种复杂的进行性神经退行性疾病，发病率在全球不断上升。自我管理干预措施在改善慢性病患者的生活质量方面大有可为。本文旨在描述一个促进自我管理工具包的开发过程和核心组成部分，以支持帕金森病患者自我管理病情：方法：采用迭代式共同设计方法，包括使用系统回顾、定性方法和理论来开发 "帕金森病患者健康生活 "工具包。我们成立了一个由帕金森病患者、家庭护理者以及医疗和社会护理专家组成的共同设计小组，以制作和完善在线自我管理工具包，并在实践中进行测试。在工具包开发的几个阶段，共成立了五个共同设计小组：结果：开发出了一款名为 "帕金森病患者健康生活 "的在线自我管理工具包，其核心内容包括：为个人量身定制的信息；使用基于资产的方法和解决问题的技能来创建和保持目标的健康部分；症状回顾和管理部分；以及药物、症状和活动/行动跟踪器。此外，还为那些无法使用在线资源的人制作了纸质替代版本。该工具包已完全手册化，并由一名接受过行为改变技术培训的 "支持者 "提供六节课的帮助。该工具包可与护理人员和医疗保健专业人员共享：结论：该工具包是帕金森病自我管理的一个强大而全面的方法。它以证据为基础，结合了理论，是与帕金森病患者和该领域的专家共同开发的。帕金森病患者健康生活工具包有可能被纳入常规医疗保健中，并与自我管理政策保持一致：作者B.M.是我们的患者和公众参与（PPI）代表，也是本文的作者。B.M.支持一个由15名PPI成员组成的团队，他们为工具包的开发做出了贡献。这些参与包括参加研究团队和指导小组会议、参加并主持共同设计的研讨会、在批准前审核所有工具包信息并支持用户测试。

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引用次数: 0

‘For Youth by Youth’: Distributive Leadership in Action With a Youth Codesign Team 青年的青年"：与青年代码设计团队一起在行动中发挥分配式领导作用。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-15 DOI: 10.1111/hex.70080

Carolyn M. Melro, Caleb Brook, Reid A. Martin, Renn A. Roberts, Sophia Young, Savannah J. R. Zalik, Clifford T. Ballantyne, Amanda Neuman, Pamela Reimer

Background

Integrated youth services are an emerging delivery model in Canada that addresses siloed and fragmented youth mental health and other services. Youth engagement is viable for developing integrated youth services when purposefully built. However, it is not always clear how youth are involved in service transformation as decision-makers, and it requires an exploration of how to work with youth authentically and intentionally in the codesign process.

Methods

This study reflects on the development of HOMEBASE, a network of integrated youth service delivery in Saskatchewan, Canada, and documents the process of actively and authentically engaging with youth through distributive leadership in the codesign process.

Findings

Youth are actively and eagerly willing to participate in the codesign process of developing integrated services when there is a shared responsibility, and they are authentically involved and informed within the decision-making process. This requires time to form trust, build relationships and provide youth with low-pressure environments to foster healthy debates.

Conclusion

By utilizing a distributive leadership approach, the Youth Codesign Team has been engaged in various levels of decision-making. By following these guiding principles, policymakers, youth development workers and researchers can engage youth in meaningful ways to improve the design and development of integrated care.

Patient or Public Contribution

Five youths from the HOMEBASE Provincial Youth Co-Design Team collaborated in writing this article based on their experiences of being engaged at varying levels of decision-making in a distributive leadership approach to building integrated youth services.

背景：在加拿大，青少年综合服务是一种新兴的服务模式，可以解决青少年心理健康和其他服务各自为政的问题。在有目的的情况下，青少年参与对于发展青少年综合服务是可行的。然而，青少年作为决策者如何参与服务转型并不总是很清楚，这就需要探索如何在代码设计过程中真实、有意地与青少年合作：本研究反映了加拿大萨斯喀彻温省青年综合服务网络 HOMEBASE 的发展情况，并记录了通过分配式领导在代码设计过程中积极、真实地与青年合作的过程：研究结果：如果有共同的责任，而且青年能够真实地参与决策过程并了解相关信息，那么青年就会积极、热切地愿意参与制定综合服务的代码设计过程。这需要时间来形成信任、建立关系，并为青年提供低压环境，以促进健康的辩论：通过采用分配式领导方法，青年规划设计小组参与了各级决策。通过遵循这些指导原则，政策制定者、青年发展工作者和研究人员可以让青年以有意义的方式参与进来，以改善综合护理的设计和发展：来自 "HOMEBASE "省级青年共同设计小组的五位青年根据他们参与不同层面决策的经验合作撰写了这篇文章。

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引用次数: 0

The Symphony of Consumer Partnering and Clinical Governance: An Organizational Review Using the RE-AIM Framework 消费者合作与临床治理的交响乐：使用 RE-AIM 框架进行组织审查。

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations

Pub Date : 2024-11-13 DOI: 10.1111/hex.70095

Jodie Nixon, Emily Steel, Warren Stubbs, Amber Williamson, Javed Khan, Phillip Carswell, Anne Coccetti

<div> <section> <h3> Introduction</h3> <p>Partnering with Consumers in healthcare systems is now widely accepted and mandated in many countries. Despite this acceptance, there is minimal information regarding the best practice of how to successfully establish systems to embed this practice into healthcare systems.</p> </section> <section> <h3> Methods</h3> <p>This evaluation used the RE-AIM implementation framework to retrospectively analyse data from a 3-year timeline to review the events relating to the transition of Consumer Partnering into a Clinical Governance Unit. Data was sourced via Phase 1 – a focus group to establish a 3-year timeline of events, enablers and barriers, and Phase 2 – a quantitative and qualitative semi-structured interview to review systems that had been developed to support embedding partnering with consumers into Clinical Governance.</p> </section> <section> <h3> Results</h3> <p>Five primary enablers and five barriers to successfully embedding a Consumer Partnering Team into a Clinical Governance Unit were identified. Enablers included Executive sponsorship and ownership of the value of partnering with consumers, Executive leadership influence on local area uptake, an organization-wide network, valuing via remuneration, and a centralized orientation and onboarding programme for Consumer Partners. Barriers included skills and attitudes of committee chairs, the size of the Directorate (smaller local areas can be easier to influence change), patient feedback data requires interpretation to be useful, staff turnover can reduce the relationships with Consumer Partners, and financial insecurity is a barrier to implementation and maintenance.</p> </section> <section> <h3> Conclusions</h3> <p>This article described how an Australian Health Service embedded a Consumer Partnering Team into a Clinical Governance Unit to ensure that partnering became business as usual practice. Enablers, barriers, and unintended consequences can be used as learnings for other organizations to develop a similar approach.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Two Consumer Partners with lived experience of the health service, and members of the organizations committee structures are part of the evaluation team. As team members, the consumers participated as equal contributors in evaluation design, analysis of the focus group and interview data, and contribution to the writing and review of the manuscript. Two Consumer Par

导言：在许多国家，医疗保健系统中与消费者建立合作伙伴关系已被广泛接受和强制执行。尽管已被接受，但关于如何成功建立系统将这一做法纳入医疗系统的最佳做法的信息却少之又少：本次评估采用 RE-AIM 实施框架，对 3 年时间内的数据进行回顾性分析，以回顾与消费者伙伴计划向临床治理部门过渡有关的事件。数据来源包括：第一阶段--焦点小组，以确定 3 年间的事件、促进因素和障碍；第二阶段--定量和定性半结构式访谈，以回顾为支持将消费者合作嵌入临床治理而开发的系统：结果：确定了成功将消费者合作团队纳入临床治理单位的五个主要促进因素和五个障碍。有利因素包括：行政人员对与消费者建立伙伴关系的价值的支持和所有权、行政领导对地方区域采纳情况的影响、全组织范围的网络、通过薪酬给予的重视，以及为消费者合作伙伴提供的集中指导和入职培训计划。障碍包括委员会主席的技能和态度、总局的规模（较小的地方区域可能更容易影响变革）、患者反馈数据需要解释才能发挥作用、人员流动会减少与消费者合作伙伴的关系，以及财政不稳定是实施和维护的障碍：本文介绍了澳大利亚卫生服务机构如何将消费者合作伙伴团队嵌入临床治理部门，以确保合作伙伴关系成为常规做法。促进因素、障碍和意外后果可作为其他组织开发类似方法的借鉴：患者或公众的贡献：评估小组中有两名具有医疗服务生活经验的消费者伙伴和组织委员会成员。作为团队成员，消费者以平等的身份参与了评估设计、焦点小组和访谈数据的分析，以及手稿的撰写和审阅。两名具有医疗服务生活经验的消费者伙伴和委员会成员参与了焦点小组和访谈。

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引用次数: 0