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

Bibliographic Data

ID19508313
AuthorsNathan Davies (0000-0003-1625-9204, Centre of Psychiatry and Mental Health Queen Mary University London UK), Megan Armstrong (0000-0001-6773-9393, Research Department of Primary Care and Population Health University College London London UK), Jennifer Pigott (0000-0002-0951-7941, Department of Clinical and Movement Neurosciences University College London London UK), Danielle Nimmons (0000-0002-1239-3417, Research Department of Primary Care and Population Health University College London London UK), Joy Read (0000-0002-3028-3975, Department of Clinical and Movement Neurosciences University College London London UK), Benjamin Gardner (0000-0003-1223-5934, School of Psychology University of Surrey Guildford UK), Bev Maydon (Patient and Public Involvement (PPI) London UK), Anette Schrag (0000-0002-9872-6680, Department of Clinical and Movement Neurosciences University College London London UK), Kate Walters (0000-0003-2173-2430, Research Department of Primary Care and Population Health University College London London UK, corresponding author)
Year2024
Volume27
Issue6
Pagese70104-e70104
Publication date2024-12-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.70104
PMID39545646
OpenAlexW4404393570
LanguageEN
Citations received2
References cited35

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

Disease · Disease management · Knowledge management · Parkinson's disease · Process management · Psychological intervention · Self-management · Applied Psychology · Chronic Disease Management Strategies · Computer Science · Diabetes Management and Education · Engineering · Medicine · Nursing · Parkinson's Disease Mechanisms and Treatments · Psychology

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