H043 What makes a ‘good death’ in Huntington’s disease for patients, family caregivers and healthcare professionals – a qualitative study
Year: 2024
Type: conference-paper
Abstract: Background As Huntington’s disease (HD) is an incurable progressive neurodegenerative disease, tailored palliative care may be appropriate in particular at the end of life. Aim To understand the relevant aspects at the end of life that make a ‘good death’ in Huntington’s disease. Method We conducted a qualitative, exploratory study, with data collected through seven semi-structured focus group interviews with a total of 40 participants from three groups: patients, family caregivers and healthcare professionals. In one session, both patients and family caregivers participated; other sessions involved the groups separately. The conversations were transcribed verbatim and analyzed through inductive thematic coding. Results We found six themes: (1) Loss of autonomy and wanting to retain control, (2) Being close to caring people, (3) Blind faith in limited expertise, (4) Comfort and preventing suffering at the time of death, (5) Acceptance: when is it the right time to die?, and (6) Finding meaning and purpose at the end of life. Conclusion Six themes reflect personal, existential, and care related aspects that are relevant for a ‘good death’ in HD, and inspire the delivery of palliative care to help shape a ‘good death’ and relieve the great burdens at the end of life with Huntington to the extent possible.
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402374362