Music therapy to address the emotional challenges of family caregivers of people with Huntington's disease: a mixed methods feasibility study

Due to the combination of specific components of Huntington’s Disease (HD), it has been recognised that the family caregivers of this population face a uniquely challenging task. Whilst music therapy has become one of the established creative therapies for people with HD, little is known regarding how music therapy might support their family caregivers. Past studies have shown that music therapy can be beneficial for carers of people with other neurodegenerative conditions, but have not examined music therapy for the family caregivers of people with HD. This study aims to address the need for improved psychological care for this population, by developing a co-designed intervention to attend to the emotional challenges which HD family carers often face.The study is centred around collaboration between Anglia Ruskin University, the Independent Neurorehabilitation Providers Alliance and Chroma Therapies, with support from the Huntington’s Disease Association (UK). Three pieces of research have been completed: a rapid evidence review to assess the literature to date, a focus group of family caregivers of people with HD to develop an optimal music therapy treatment model and an eight week, online, therapist-led combined active and receptive music therapy programme to test the feasibility of the online treatment.The primary outcomes focused on the demand for, acceptability and implementation of the intervention; potentially leading the way for a larger future study. The secondary outcomes addressed impact; the participants’ satisfaction levels and feelings about their life before, during and after treatment. Outcomes were collected at baseline, mid-way, at the end of therapy and three weeks post-treatment. An initial single-session pilot test indicated certain positive benefits to participants and necessary refinements to the treatment protocol which were later made in consultation with the recruited specialist music therapist delivering the service.Data analysis of online questionnaires and semi-structured interviews revealed important recruitment information and helpful participants’ responses enabling refinements to the session protocol in relation to acceptability and implementation. Secondary outcomes regarding the treatment’s impact tentatively suggest overall positive effects of the treatment on caregivers’ emotional challenges.The study’s results indicated that the online music therapy programme was feasible; the intervention experienced sufficient demand and was considered acceptable, and could be implemented successfully. Overall, qualitative data showed that music therapy provided a powerful experience, benefitting the caregivers in relation to their emotional challenges. The quantitative results informed the secondary outcomes, showing that overall, the quality of life of the family caregivers of people with HD could be improved by attending online music therapy. The small sample size only allows for an indication of these results; thus the secondary findings are presented tentatively.