Perceptions of people with Parkinson’s and their caregivers of falling and falls-related healthcare services- a qualitative study

INTRODUCTION: Falls are common in Parkinson’s disease, and a recognised research priority. Falls lead to physical and psychological morbidity in people with Parkinson’s disease and their caregivers, however, those with cognitive impairment/ dementia and caregivers have often been excluded from previous studies. This qualitative study explored how people with Parkinson’s disease and their family caregivers understood and experienced falling and healthcare services relating to falls prevention and management. METHODS: A varied and purposive sample of 20 people with Parkinson’s disease (40% confirmed or suspected cognitive impairment/ dementia) and 18 caregivers took part in semi-structured interviews. Eight people with Parkinson’s disease and their caregivers were interviewed as a dyad, 22 participants were interviewed alone. Interviews were analysed through inductive thematic analysis. RESULTS: Four themes were developed: (i) struggling with thoughts and feelings about falling, (ii) recognising and managing risks surrounding falling, (iii) navigating health and care provision for falling, and (iv) changing as a couple due to falling. Different aspects of falls provoked a range of negative emotions and a variety of coping strategies were adopted. Falls and trying to avoid falls burdened a couple in a number of ways; beyond physical health they also affected functioning, physiological wellbeing, and relationships. Dyads analysed falls to understand their aetiology and described working together to manage them. This often happened in the absence of adequate support and advice with little involvement of healthcare professionals. When cognitive impairment/ dementia was present this brought additional challenges to falls management, with caregivers taking on a greater and more frustrating role. CONCLUSION: Dyads required relevant falls-related information and the difficulties associated with cognitive decline should be recognised by researchers and healthcare professionals. Dyads required support in attributing reasons for falls, and increased awareness of healthcare professionals’ different roles to improve patient- professional communication and facilitate patient-centred care.