Work

Huntington’s disease caregivers: A qualitative exploration of caregivers experience

Year: 2025

Type: article

Abstract: Caring for a family member with Huntington's disease can be complex and challenging. This study set out to investigate the research question: what are the experiences of Huntington's disease caregivers. In this qualitative study, 11 adult caregivers (6 female and 5 male, aged 49-77 years), of a family member with Huntington's disease participated in semi-structured interviews, using either video-link or telephone. Data analysis was informed by interpretative phenomenological analysis. The analysis identified three themes related to the caregiver experience: The impact on the caregiver; The impact of the genetic risk; Accessing health care & support services. Complexities of caregiving are compounded by the lack of services available to Huntington's disease patients, as well as the lack of knowledge and expertise related to the disease. This study highlights the need for enhanced knowledge of the disease in community services, along with access to psychological and multidisciplinary support.

Source: Journal of Health Psychology

DOI: 10.1177/13591053251328934

Authors: Síle Carney, Niall Pender, Elaine Rogers

Institutions: University of Limerick, Beaumont Hospital, Health Service Executive, Trinity College Dublin

Language: English

Topic: Nursing care and research

Subfield: Pharmacy

Field: Health Professions

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,650