Evaluating the web-based ‘Partner in Balance’ program for informal caregivers of people with Huntington's disease: A pilot study

Abstract

BackgroundHuntington's disease (HD) poses significant challenges for both affected individuals and their informal caregivers. With the progression of HD, caregivers frequently prioritize caring for the person with HD over their own well-being. ‘Partner in Balance’ (PiB) is an 8-week online self-management program guided by a personal coach, developed to help caregivers of people with HD cope with challenging situations and develop skills to increase resilience and prevent overburdening. AimsThis pilot study evaluates the feasibility and preliminary effects of the PiB-HD program. MethodsThe study employed a pre-post design. Perceived feasibility by HD caregivers was evaluated using both quantitative and qualitative measures. Preliminary effects were based on self-report measures of self-efficacy, mastery, mood, quality of life, and capability to function. Coaches' evaluations were conducted using a questionnaire. ResultsIn total, 18 caregivers completed the intervention. Findings demonstrate positive responses regarding the program's usability, relevance, and acceptability. Participants found the program helpful in addressing challenges, gaining insight into their actions, and feeling better equipped with skills to face future challenges. Descriptive statistics suggest that the PiB-HD program shows potential for reducing stress and anxiety. Additionally, coaches (n = 9) viewed the program positively for its usability, integration potential into their work, flexibility, and time efficiency. ConclusionsThe PiB-HD program proved to be feasible, usable and acceptable for caregivers of people with HD. These results provide directions for further research into the effectiveness of PiB-HD, and can already be utilized to advise on the deployment of eHealth in the provision of HD care.