How does perceived fall risk influence decisions about whether to undertake activities in people with Parkinson’s disease and their care partners? A qualitative study

Abstract

Purpose To explore how perceptions of fall risk influence decisions to undertake activities in people with Parkinson’s disease who have fallen, along with their care-partners. Materials and methods This qualitative study used semi-structured interviews to collect data from eight people with moderate to severe Parkinson’s Disease and freezing of gait (including those with cognitive impairments) and their care-partners. An inductive approach to thematic analysis was used to analyse the data. Results Four main, interconnected themes emerged, and a framework was developed to illustrate these connections. Weighing up the risks and benefits reflected the constant tension between assessing the likelihood of falling and potential benefit of any activity; Being fearful heightened the perceived risk resulting in a tendency to avoid or modify activities; Desire to lead a normal life heightened the perceived benefit of any activity, leading towards risk taking behaviour; It’s a part of Parkinson’s provided the context in which the decision-making process took place, with the reality of a progressive disorder influencing choices and contributing to a belief that falls were inevitable. Conclusions There is a complex interaction between perceptions of fall risk and behaviour. An understanding of these interactions will assist therapists to tailor individualised fall prevention interventions. IMPLICATIONS FOR REHABILITATION People are constantly weighing up the risks and benefits of activities while balancing fear of falling and a desire to lead a normal life in the context of Parkinson’s disease. The resulting activity choices vary along a continuum from avoiding activities to taking risks, with a common approach to minimise the risk and then embrace the activity. Therapists can help people with Parkinson’s and their care-partners to determine what level of risk is acceptable for them when balancing risk with quality of life. Understanding how people decide if they will undertake an activity that poses a risk of falling will allow therapists and patients to co-design fall prevention and management interventions based on the patient’s values and priorities.