F26 How narrative methods can illuminate the Huntington's disease illness experience. (12th September 2022)

• Record Type: Journal Article
• Authors: Carreon, Richie Paul; Hayes, Julie-Ann; Deehan, Donal; Leavey, Conan
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93(2022)Supplement 1
• Page Start: A45
• Page End: A45
• Publication Date: 2022-09-12
• Subjects: Person-centred -- illness narratives -- qualitative -- case studies; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-ehdn.117
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Illness narratives can shed light on subjective experience, which is central in promoting person-centred care. However, there is scant research on how people with Huntington's Disease communicate their illness experiences. Aim: To explore how people with HD (pHD) construct their illness narratives. Methods: A longitudinal case study design focused on three people in early, middle, and late-stage HD, alongside their family caregivers and health professionals.Methods of data collection tailored to the pHD were used to elicit their illness narratives, including biographical interviews, genograms, ecomaps, life story booklets and artefacts. Face to face, telephone interviews and Voice over Internet Protocols (VoIP) were used. The multi-methods and multi-sources of data were maintained over 18 months during the study. Results: The participants valued the option to use different narrative methods, and pHD determined their own choice on which method to use, including whether to communicate independently or with the aid of other people involved in their care. There was a strong preference for face-to-face interviews over remote technology. People with HD in the later stages acknowledged their physical and communication difficulties, and the support of their primary caregivers was vital to sustain research participation. Conclusion: The concept of person-tailored approaches to research is highlighted and should be promoted alongside the delivery of person-centred care. Access to different methods of support can facilitate better engagement with pHD. The flexibility of narrative approaches in research can further enhance the HD person's ability to communicate their illness experience.