Maud M.J. Daemen , Lizzy M.M. Boots , Mayke Oosterloo , Marjolein E. de Vugt , Annelien A. Duits
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Additionally, coaches (<em>n</em> = 9) viewed the program positively for its usability, integration potential into their work, flexibility, and time efficiency.</div></div><div><h3>Conclusions</h3><div>The PiB-HD program proved to be feasible, usable and acceptable for caregivers of people with HD. 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引用次数: 0
摘要
背景亨廷顿氏病（Huntington's disease，HD）给患者及其非正式护理人员都带来了巨大的挑战。随着亨廷顿舞蹈症病情的发展，照顾者往往会将照顾亨廷顿舞蹈症患者置于自己的福祉之上。平衡中的伙伴"（PiB）是一项为期 8 周的在线自我管理计划，由一名私人教练指导，旨在帮助 HD 患者的照顾者应对具有挑战性的情况，并培养他们提高适应能力和防止负担过重的技能。采用定量和定性的方法评估血液透析护理人员认为的可行性。初步效果基于对自我效能、掌握程度、情绪、生活质量和功能能力的自我报告测量。结果共有 18 名护理人员完成了干预。结果表明，该计划的可用性、相关性和可接受性都得到了积极的回应。参与者认为该计划有助于应对挑战、深入了解自己的行为，并感觉自己具备了更好的技能来应对未来的挑战。描述性统计结果表明，PiB-HD 计划具有减轻压力和焦虑的潜力。结论事实证明，PiB-HD 计划对于 HD 患者的照顾者来说是可行的、可用的和可接受的。这些结果为进一步研究 PiB-HD 的有效性提供了方向，并可用于在提供 HD 护理的过程中为电子保健的部署提供建议。
Evaluating the web-based ‘Partner in Balance’ program for informal caregivers of people with Huntington's disease: A pilot study
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
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