H050 Evaluating the web-based ‘partner in balance’ program for family caregivers of people with Huntington’s disease: a pilot study
<h3>Background</h3> Huntington’s disease (HD) poses significant challenges for both affected individuals and their family caregivers. With the progression of HD, caregivers frequently prioritize care over their own well-being. ‘Partner in Balance’ (PiB) is an online self-management program developed to help caregivers of people with HD cope with challenging situations and develop skills to maintain balance in daily life. <h3>Aims</h3> The current study aims to evaluate the feasibility of the PiB-HD program and preliminary effects by conducting a pilot. <h3>Methods</h3> The study employed a pre-post design. Participants followed the 8-week program guided by a personal coach. Preliminary effects were assessed on self-efficacy, mastery, stress, anxiety, depression, quality of life, and capability well-being. Perceived feasibility was evaluated through quantitative and qualitative measures. <h3>Results</h3> In total, 18 persons completed the intervention. Our findings demonstrate the feasibility of the PiB-HD program, with positive responses regarding its usability, relevance, and acceptability. Qualitative results show that participants found the program helpful in addressing challenges, gaining insight into their actions, building confidence in managing their situations, and feeling better equipped with skills to face future challenges. Quantitative results showed a significant reduction in stress levels post-intervention compared to pre-intervention. <h3>Conclusions</h3> The PiB-HD program proves to be feasible, usable and acceptable for caregivers of people with HD. These positive feasibility results provide direction for further research into the effectiveness of PiB-HD. The findings of this current study can already be utilized to advise on the deployment of eHealth in the provision of HD care.
Authors
- Annelien Duits (ORCID: https://orcid.org/0000-0003-0279-1806)
- Marjolein Elizabeth de Vugt (ORCID: https://orcid.org/0000-0002-2113-4134)
- Mayke Oosterloo (ORCID: https://orcid.org/0000-0003-0732-4406)
- Lizzy Boots (ORCID: https://orcid.org/0000-0002-8309-4502)
- Maud Daemen (ORCID: https://orcid.org/0000-0001-5038-8910)
Institutions
- Radboud University Nijmegen (NL)
- Maastricht University Medical Centre (NL)
- Radboud University Medical Center (NL)
- Maastricht University (NL)
Publication Details
- Published
- 2024-09-01
- DOI
- https://doi.org/10.1136/jnnp-2024-ehdn.280
- Primary Topic
- Genetic Neurodegenerative Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.00