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Resignation, in the absence of cure: A narrative study on the illness experience of Huntington’s Disease.

Carreon, RP (2023) Resignation, in the absence of cure: A narrative study on the illness experience of Huntington’s Disease. Doctoral thesis, Liverpool John Moores University.

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The illness experience of Huntington’s Disease (HD), a rare genetic progressive fatal neurological disorder, receives scant attention in qualitative research despite the historical stigma and shame associated with the movement disorder, serious mental illness, and the pervasive suffering it causes to the individual and their families. This in-depth narrative study aims to give voice to the person with HD and explore how they construct their illness narratives. It draws upon illness storylines and dialogic approaches to narrative analysis. A scoping literature review on HD illness experience and a Participatory Research Exercise (PRE) with HD stakeholders informed the creation of the narrative cases. A total of nineteen participants were involved at various stages of the study: ten participants in the PRE, and nine in the narrative cases.
At the heart of the study were three stories of people with HD, supplemented by their family caregivers and health care professionals. Multiple sources and methods of data collection were used, including biographical interviewing, genograms, life story booklets and other personalised artefacts. The tailored narrative methods supported the narration and construction of the story of the person with HD sustained during 18 months of participation in the study.
The HD stories revealed the unique illness experience of three people in different disease trajectories. The interviews were analysed using Arthur Frank’s (1995) archetypal storylines and an additional storyline was added due to the unique nature of the HD experience. The study proposes the novel storyline of Resignation, for Restitution is no longer possible for this terminal illness, and has receded into the background of participants’ stories.
The study highlights how the narrative methodology can provide valuable insight into the HD illness experience and contributes to a limited HD qualitative literature on the use of multiple data sources through a longitudinal approach in studying illness experience. The study also begins to fill the gap in physiotherapy knowledge on the illness experience of HD. From a physiotherapy perspective, listening to storylines can provide a rich understanding of people’s experiences by examining social, cultural and contextual factors which can help clinicians develop educational resources to inform better patient care and help support advocacy efforts.

Item Type: Thesis (Doctoral)
Uncontrolled Keywords: Huntington's Disease; Qualitative; Narrative
Subjects: R Medicine > RT Nursing
Divisions: Nursing & Allied Health
SWORD Depositor: A Symplectic
Date Deposited: 19 Jun 2023 10:03
Last Modified: 19 Jun 2023 10:08
DOI or ID number: 10.24377/LJMU.t.00019711
Supervisors: Hayes, J-A, Leavey, C and Deehan, D
URI: https://researchonline.ljmu.ac.uk/id/eprint/19711
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