A delicate equilibrium: living with Huntington's disease

Wilson, Eleanor (2013) A delicate equilibrium: living with Huntington's disease. PhD thesis, University of Nottingham.

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Background: People with Huntington’s disease (HD) can be affected by motor, cognitive and behavioural symptoms. The length of the illness trajectory can result in patients receiving care at home for extended periods during which the contribution from family caregivers is invaluable. There has been little research into patient or carer perspectives on needs or how these should be met, and how these correspond to professional viewpoints.

Objectives: To gain an understanding of living with, caring for and working in the field of HD.

Study design: A collective case study approach was used to gather data from the person with HD, their family carer and a nominated healthcare professional to build 15 cases involving 33 individuals and 115 interactions (68 interviews and 47 observations) over three years of study participation.

Findings: Living with HD requires continued readjustment to maintain balance between increasing disability, diminishing cognition and living well at home. Patients and carers were challenged to cope with: the diagnosis; an impulse to secrecy and a duty to share knowledge; autonomy and decision making; the transformation of homes to hospitals; and a shift in the burden of care when the patient moved to a residential care home. Examination of services showed how multidisciplinary working, a keyworker approach, disease, person and service specific knowledge alongside continuity of staffing contribute to quality care.

Conclusion: This is the first qualitative study of living with HD incorporating multiple perspectives over time. It explored the complexity of living with HD and the ways in which care can be provided in the community. The study identified a number of daily challenges for both family and professional carers when changes in capacity occur slowly over time. Holistic, multidisciplinary and flexible care is shown to be essential for those trying to balance the delicate equilibrium of living with HD.

nb. The journal articles and book extracts in appendix A have not been included in the electronic version for copyright reasons.

Item Type: Thesis (University of Nottingham only) (PhD)
Supervisors: Pollock, K.
Aubeeluck, A.
Subjects: W Medicine and related subjects (NLM Classification) > WL Nervous system
Faculties/Schools: UK Campuses > Faculty of Medicine and Health Sciences > School of Health Sciences
UK Campuses > Faculty of Medicine and Health Sciences > School of Nursing
Item ID: 13487
Depositing User: EP, Services
Date Deposited: 20 Feb 2014 08:27
Last Modified: 08 May 2020 10:46
URI: https://eprints.nottingham.ac.uk/id/eprint/13487

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