Psychological care for Huntington's disease: A qualitative study exploring interventions in the Netherlands

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Abstract
Objectives: Huntington's disease (HD) is a hereditary neurodegenerative disorder characterized by a range of motor, cognitive, and psychiatric symptoms. Psychological symptoms can arise from being at risk for the disease and from its manifestation, necessitating psychological interventions to address the evolving burden, even before onset. This qualitative study explores the psychological interventions used for HD within the Dutch health care context and identifies barriers and facilitators for their implementation across the different HD disease stages. Methods: A qualitative approach using semi‐structured interviews was employed, involving 13 experienced psychologists from HD health care facilities in the Netherlands. Thematic analysis was conducted to explore the types of psychological interventions used and the facilitators and barriers affecting their implementation. Results: The study identified a range of generic and more specific interventions, with their application varying according to the stages of HD. Early interventions focus on genetic counselling and trauma therapy, while mid to late‐stage care incorporates acceptance and commitment therapy (ACT) and cognitive behavioural therapy (CBT) for managing psychological symptoms. Late‐stage interventions shift to mediated approaches involving family and care teams. Key barriers include cognitive impairments and difficulties in referring patients to other mental health care providers, while key facilitators include multidisciplinary collaboration and preventive interventions. Conclusions: Psychological interventions for HD in the Netherlands are adapted to the disease progression, emphasizing the need for stage‐specific and personalized care. The findings highlight best‐care practices and the importance of early intervention, multidisciplinary collaboration, and evaluation while identifying areas for further research and improvement in care quality.
Funding Information
  • Bontius Stichting
  • Leids Universitair Medisch Centrum

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