H032 [Study protocol] narrative identity during advanced Huntington’s disease: Huntington’s disease and i, who am i?

Background Huntington’s disease (HD) impacts people’s lives fundamentally. The gradual loss of bodily, social and psychological functioning influences self-perception of independence and social relations, and leads to loss of sense of self until death (Varela et al., 2022). A study by Engels and Van Duijn (2022) shows that patients struggle to preserve their identity while acknowledging that disease progression is changing essential aspects of their identity. Their study underscores the importance of enabling patients with HD who reside in nursing homes to maintain their personal identity but does not specify what is understood by ‘identity’, leaving a knowledge gap. Our study aims to fill this gap by providing insight into the patients’ lived experiences and a deeper understanding of what constitutes personal identity in this context. Aims -Gain insight into how people with HD who reside in nursing homes experience and express their identity in their daily lives. -Understand whether or not people with HD perceive the symptoms as an integral part of their identity, and how they incorporate or separate these symptoms from their identity. Method/Techniques A non-invasive observational qualitative study. Analysis will be guided by the phenomenological, hermeneutical, and ideographic underpinnings of the interpretive phenomenological analysis (IPA). Results/Outcome: We aim to include 6-10 patients in the Netherlands. Data will be obtained using interviews and observations with patients, their relatives, and professionals. Results are expected in 2024/2025. Conclusions This study will inform caregivers and policymakers for better support of people with HD, and ultimately improve the quality of life and care. References Engels J, van Duijn E. Nursing approaches and perceived quality of life in advanced stage huntington’s disease patients. Journal of Huntington’s Disease 2022;11(3):313-320. Varela LE, Arias MM, Martorell-Poveda MA, Giraldo CV, Estrada-Acuña RA. Beyond the clinical context: the process of losing oneself living with Huntington’s disease. Orphanet Journal of Rare Diseases 2022;17(1):184.