Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease

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

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

Patient or Public Contribution

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 supporting with the user testing.

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共同设计帕金森病患者自我管理工具包。

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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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.