“I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy

Zarotti, Nicolò and D'Alessio, Barbara and Scocchia, Marta and Casella, Melissa and Squitieri, Ferdinando (2024) “I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy. NeuroSci, 5 (2). pp. 98-113. ISSN 2673-4087

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Abstract

People with Huntington's disease (HD) often experience psychological difficulties linked with disease progression and the adjustment to living with a chronic condition, which are also frequently shared by their informal caregivers (e.g., partners). Although limited, the current literature on psychological care for people with HD shows that interventions have the potential to drive improvements in mental health and quality of life. However, the experience of accessing and receiving psychological support for HD remains unclear across several countries. This study adopted a qualitative design to explore the experiences of psychological support for HD from the perspectives of patients and caregivers living in Italy. Semi-structured interviews were carried out with 14 participants-7 patients with early-manifest HD and 7 partners acting as their caregivers. The resulting data were analysed through thematic analysis. Four overarching themes were identified: (1) the availability of psychological support for HD, (2) barriers to accessing psychological support, (3) enablers to accessing psychological support, and (4) the future development of public psychological provision for HD. In Italy, patients and caregivers perceive public psychological support for HD as unavailable or inadequate, and private therapy is often seen as unaffordable. Barriers such as distrust in public healthcare and preconceptions about therapy may limit access, while advice from HD organisations and seeking therapy for other reasons may act as enablers. A strong emphasis is put on the need for accessible public psychological support throughout all the stages of the condition.