Existing research suggests that caregivers of Huntington’s Disease (HD) face unique challenges linked to the complex nature of the disease. Despite the growing interest in HD research in family caregivers, little is known about caregivers in nursing homes, namely their experiences in caring for HD patients. Identification of caregivers’ needs can improve their well-being and the quality care they provide for patients with HD. This study was undertaken to explore the perspectives of this under-researched group caring for a neurological disease.Methods
Twenty-one HD caregivers consisting of four nurses and seventeen health care assistants participated in four focus group discussions in a nursing home in Liverpool. The qualitative approach investigated participants’ experiences in caring for HD patients throughout the disease trajectory. The study identified the challenges, resources and barriers in providing care and outlined recommendations to improve HD care. A semi-structured discussion guide was used, and the focus groups were audio-recorded, transcribed verbatim and entered in Nivo10 for thematic analysis.Results
The findings show the general agreement of participants across the four focus group discussions. Five inter-related themes were at the core of HD care: ‘The patient is the biggest teacher’, ‘Multidisciplinary care: help or hindrance’, ‘Supporting the patient in their series of bereavements’, ‘A good death’ and ‘Coping with the complex disease’. There is a need for more comprehensive resources to improve care for HD complex needs. Training on end of life care and effective communication approaches are identified. The findings suggest that interventions that enhance coping, and provision of adequate staffing benefit the caregivers as well as the care HD patients receive.Conclusions
The caregivers in this study need practical support alongside better training. Health professionals should be better educated on the health needs of HD patients, and care providers should focus on identifying the needs of HD caregivers, offer emotional support to families, and support caregivers’ coping strategies. There is an imperative need to foster resilience to help improve caregivers’ well- being, and maintain continuity of care to promote HD patients’ quality of life.