Self-management of falling in Parkinson’s Disease: Building upon experiences of people with Parkinson’s, their Caregivers and Healthcare Professionals to develop and conduct a feasibility study of a new intervention.

Abstract

Falls are common in people with Parkinson’s disease (PwP) and a recognised research priority. Falling is associated with physical and psychological morbidity for PwP and their informal caregivers. This thesis reports a mixed-methods programme of research to develop and conduct a feasibility study of a falls-based self-management intervention for PwP and their caregivers.

A systematic review of falls-based self-management interventions was undertaken. Six studies were identified, and their self-management components and outcomes mapped. The review could not draw clear conclusions about the effect of these interventions or beneficial components that they should contain.

A mixed-methods study of falls experiences was conducted. 61 PwP and 56 caregivers completed questionnaires and 20 PwP and 18 caregivers were interviewed. Falls experiences and selfmanagement were variable but unmet falls-related needs were consistently described, in particular, identifying reasons for falls and communicating with healthcare professionals (HCPs).
A qualitative study exploring HCPs’ experiences of falls in PwP was undertaken (n=12). HCPs discussed how current healthcare provision left dyads’ needs unmet, and how challenging dyads’ misperceptions of falling, and engaging them with falls-management, may enhance dyads-HCPscommunication.

A falls-based self-management intervention was developed, drawing on existing literature and insights from the aforementioned PwP, caregiver and HCPs studies. The intervention consisted of a paper-based guide alongside brief telephone support. PwP, caregivers and HCPs (n=13) participated in usability testing, leading to intervention modifications.
The acceptability and feasibility of the intervention was assessed in a mixed-methods study. 74 PwP and 58 caregivers completed pre and post intervention questionnaires. A subsample were interviewed (n=15 PwP, n=11 caregivers). Some described reduced falls concerns, increased focus on falls management and enhanced falls-related problem-solving. Ways to improve acceptability and engagement were identified. Further research should assess the efficacy of the intervention for falls and psychological outcomes in PwP and caregivers.

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Identifiers

ORCID for Helen Roberts: orcid.org/0000-0002-5291-1880

ORCID for Sarah Kirby: orcid.org/0000-0003-1759-1356

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