124. What are the needs and preferences of people with Parkinson’s and their informal caregivers for the effective self-management of falling? A mixed methods study

Owen, Charlotte, Ibrahim, Kinda, Boswell, Amy, Dennison, Laura, Gaulton, C, Kirby, Sarah and Roberts, Helen (2019) 124. What are the needs and preferences of people with Parkinson’s and their informal caregivers for the effective self-management of falling? A mixed methods study. British Geriatrics Society Communications to the Autumn Meeting, , London, United Kingdom. 14 - 16 Nov 2018. i36 . (doi:10.1093/ageing/afy205.01).

Abstract

Introduction: falls are common in Parkinson’s disease, and a recognised research priority. This mixed methods study aimed to establish the experiences, needs and preferences of people with Parkinson’s (PwP) who fall, and their informal caregivers, for the effective self-management of falls. PwP with cognitive impairment (CI)/ dementia were included.

Methods: PwP and caregivers completed questionnaires about fall history, fear of falling and caregiver burden. A purposive sub-sample participated in semi-structured interviews. Questionnaires were analysed through descriptive statistics, interviews were analysed through inductive thematic analysis.

Results: 61 PwP and 56 caregivers completed questionnaires. Of these, 20 PwP and 18 caregivers were interviewed. Median number of falls in the last year was 4. 70% reported difficulty getting up from the floor, and caregivers often provided support. 71% of caregivers had high caregiver burden. Five themes emerged from the interviews: (1) establishing reasons for falls: attributions and perceptions; (2) coping and adaptation; (3) recognising and managing risks surrounding falling; (4) concerns and worries about consequences; (5) PwP and caregivers as case managers. There was heterogeneity of situations where PwP could feel unsteady or fall. Dyads often sought to identify the cause of falling; uncertainty could lead to frustration. Dyads displayed a range of problem and emotion-focused coping strategies. Caregivers played a key role in falls management, particularly in the setting of CI/dementia. There was often considerable impact on the relationship within the dyad, with loss of caregiver identity. Dyads could appear lost within the healthcare system, and be unsure of the role of healthcare professionals (HCPs) in falls management.

Conclusions: dyads displayed variety in their experiences and unmet needs for successful falls management. Dyads require support in attributing reasons for falls and in communicating with HCPs. Results from this study will inform the development of a falls-based self-management guide for PwP and caregivers.

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Contributors

Author: Kinda Ibrahim

Author: Sarah Kirby

Author: Helen Roberts

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