Experience and acceptability of a guided self-help intervention for anxiety for individuals with Huntington’s disease (GUIDE-HD trial) : A qualitative study

Dale, Maria and Melvin, Katie and Eccles, Fiona and Bell-Jones, Lee and Khan, Zaynah and Wells, Robert and Johnson, Jenny and Zarotti, Nicolò and Simpson, Jane (2025) Experience and acceptability of a guided self-help intervention for anxiety for individuals with Huntington’s disease (GUIDE-HD trial) : A qualitative study. Neuropsychological Rehabilitation. pp. 1-24. ISSN 0960-2011

Text (NRGuide_HD_Qual_Accepted)
NRGuide_HD_Qual_Accepted.pdf - Accepted Version
Available under License Creative Commons Attribution.
Download (348kB)

Abstract

People with Huntington’s disease (HD) commonly experience anxiety, yet access to psychological interventions remains limited. Guided self-help is a low-cost, scalable, evidence-based approach with the potential to improve access to psychological support. This qualitative study aimed to explore participants’ experience of GUIDE-HD, a remote guided self-help intervention designed to address anxiety in people with HD based on cognitive behavioural therapy and acceptance and commitment therapy, by examining: (i) the acceptability of the intervention, (ii) any perceived benefits or challenges, and (iii) ways to enhance its relevance and accessibility for people with HD (pwHD). Qualitative individual semi-structured interviews were conducted with nine pwHD and three carers and analysed using framework analysis. Three overarching themes emerged: (1) A therapeutic journey for people with and affected by HD; (2) Mechanisms of benefit; (3) Experiencing various gains. Participants valued the intervention’s relevance, structure, accessibility, personalization and facilitation. Reported gains extended beyond reduced anxiety to increased acceptance of the realities of living with and managing the condition and better relationships. While a number of limitations should be considered, such as the sample size and its predominant female representation, the GUIDE-HD intervention was acceptable and showed promise as a tailored psychological approach for pwHD.