Falls are common in Parkinson’s disease, have a negative impact on health and independence and a high cost to the NHS. They are therefore a recognised research priority. Informal caregivers, particularly spouses, are often involved in trying to prevent and manage falls but their perspectives have been neglected in research.
I directed a project focussing on understanding patient and caregiver experiences and perspectives to improve how falls are managed and/or prevented.
We reached out to local support groups for people with Parkinson’s disease and invited people to participate in an interview about their experiences of falling and managing falls. 20 people with Parkinson’s disease and 18 of their caregivers (husbands, wives) took part. We used a qualitative analysis approach and developed themes from the data.
- People try but struggle to understand why they fall
- Falling has negative physical, psychological and social consequences
- People cope and adapt in a range of ways. But adapting usually means a more limited life for patients and caregivers.
- Difficulties are exacerbated when the person with Parkinson’s disease also has dementia.
- The health system is perceived as confusing and inadequate
- Patients and families don’t understand who to contact or get timely information and support.
- Spouses are burdened with the intensive work they do to manage falls on top of coping with other aspects of Parkinson’s Disease
Our report contains valuable insights for those designing, improving, and delivering interventions and services for people with Parkinson’s Disease. Paying attention to patient and family perspectives and needs will help to ensure they are acceptable, engaging and ultimately effective.
Specifically, this work highlighted the need to develop:
- Self-management interventions aimed at couples/families to help people competently self-manage Parkinson’s Disease in order prevent and manage falling.
- Easier to navigate services
- Better communication between families and health professionals
Dr Charlotte Owen1
Prof Helen Roberts1
- University of Southampton