Search

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions., Methods: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions., Discussion: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's., Trial Registration: ISRCTN92831552. Registered on 26th Oct 2021., (© 2023. The Author(s).)

Objective: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives., Design: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis., Setting/participants: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45-89 years) and 17 family members (13 spouses and 4 adult children, aged between 26-79 years)., Results: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent., Conclusion: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being., Competing Interests: The authors have declared that no competing interests exist.