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.

Keywords:

• Parkinson’s disease
• falls
• cognitive impairment
• qualitative
• rehabilitation
• decision-making

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project was supported by a University of Sydney Ageing in Place Seed Grant.