‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

Abstract

Existing research suggests that family caregivers of persons with Huntington's disease face a unique series of problems, linked to the complex nature of the disease. There is little research that explicitly investigates the impact of HD on the quality of life (QoL) of the family caregiver. The purpose of this study was to explore the quality of life issues for family carers of Huntington's disease patients in a focus group setting. Participants were recruited via a Huntington's Disease Association (HDA) family conference day. Six semi-directed focus groups (n=47) explored disease-specific aspects of QoL that were deemed important to family carers of this carer group. Data were analysed using Interpretative Phenomenological Analysis (IPA). Analysis of the focus group data identified four superordinate themes: 'Levels of Support', 'Dissatisfaction with Caregiving Role', 'Practical Aspects of Caring' and 'Feelings and Emotional Well-being'. These data provide evidence that QoL is compromised in many ways for HD family carers. The carers in this study often negated their own needs as their caregiving role overwhelmed them and 'took over' their lives.