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

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.

Risk Factors and Interventions for Suicide in Huntington’s Disease—A Systematic Review

“…In the context of HD care, integrating psychological services into treatment models can play a crucial role in achieving this goal. These integrated care models help alleviate the psychological burden associated with HD, not only improving patients’ well-being but also reducing healthcare costs [ 59 , 60 ]. The studies examined suggested that depression, anxiety, and neuropsychiatric symptoms significantly contribute to the risk of suicide in HD and require considerable attention from a clinical point of view [ 42 ].…”

“…Effective HD treatment should not only focus on managing symptoms but also aim to improve the overall well-being of those affected. Patients are concerned with more than just their test results or symptom severity; they are deeply impacted by how HD affects their daily lives [ 60 ]. Recognizing the importance of mental health is crucial in shaping the outcomes of HD.…”

“…Psychologists should be integral members of HD care teams globally, yet this is not consistently the case. Italy, in particular, exhibits deficiencies in this regard, with only one recent study [ 60 ] addressing psychological interventions for HD and the current availability and distribution of mental health services for HD within communities remaining uncertain. This highlights the urgency of improving clinicians’ understanding of HD and its psychological implications, promoting collaboration with patient organizations, and adopting a holistic approach to psychological care that addresses the diverse needs of individuals and families affected by HD.…”

“…To enhance accessibility, personalized interventions, such as online therapy and home visits, should be considered. Additionally, in future, systemic approaches that involve the entire family system should be prioritized in the public provision of psychological services for HD in Italy [ 60 ].…”