Maud M.J. Daemen , Lizzy M.M. Boots , Mayke Oosterloo , Marjolein E. de Vugt , Annelien A. Duits
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引用次数: 0
Abstract
Background
Huntington'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.
Aims
This pilot study evaluates the feasibility and preliminary effects of the PiB-HD program.
Methods
The 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.
Results
In 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.
Conclusions
The 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.
期刊介绍:
Official Journal of the European Society for Research on Internet Interventions (ESRII) and the International Society for Research on Internet Interventions (ISRII).
The aim of Internet Interventions is to publish scientific, peer-reviewed, high-impact research on Internet interventions and related areas.
Internet Interventions welcomes papers on the following subjects:
• Intervention studies targeting the promotion of mental health and featuring the Internet and/or technologies using the Internet as an underlying technology, e.g. computers, smartphone devices, tablets, sensors
• Implementation and dissemination of Internet interventions
• Integration of Internet interventions into existing systems of care
• Descriptions of development and deployment infrastructures
• Internet intervention methodology and theory papers
• Internet-based epidemiology
• Descriptions of new Internet-based technologies and experiments with clinical applications
• Economics of internet interventions (cost-effectiveness)
• Health care policy and Internet interventions
• The role of culture in Internet intervention
• Internet psychometrics
• Ethical issues pertaining to Internet interventions and measurements
• Human-computer interaction and usability research with clinical implications
• Systematic reviews and meta-analysis on Internet interventions