背景:对痴呆症患者的非正式护理不仅会影响主要照顾者的福祉,还会改变他们的角色以及与社会环境的互动。新的在线干预措施可能有助于获得社会支持。最近,一个在线社交支持平台,Inlife,是在荷兰开发的,旨在加强非正式支持网络中的社会支持和积极互动。
目的:本研究旨在评估Inlife对痴呆症患者照顾者的有效性。
方法:对96名痴呆患者照顾者进行了一项随机对照试验。参与者被随机分配到Inlife干预或等待列表对照组。Inlife使用16周后,等待列表控制组可以开始使用Inlife。在基线(T0)评估效果,8周(T1),和16周(T2)。16周随访评估(T2)作为主要终点,用于评估通过在线自我报告问卷评估的主要和次要结果变量的结果。主要结果包括对护理人员能力的感受和感知的社会支持。次要结果包括获得支持,孤独的感觉,心理抱怨(例如,焦虑,stress),和生活质量。
结果:在主要结局方面,干预组(n=48)相对于对照组(n=48)没有显着改善(护理能力感:b=-0.057,95%CI-0.715至0.602,P=.87;感知社会支持:b=-15.877,95%CI-78.284至46.530,P=.62)或任何次要结局。这与我们的定性发现形成鲜明对比,这些发现表明Inlife具有促进日常生活中护理过程的潜力。对于所有Inlife用户来说,坚持并不是最佳的。额外的符合方案和敏感性分析也显示,对于高活跃的Inlife用户或特定亚组,没有有益的结果。当成为更大网络的一部分时,Inlife用户更加活跃。
结论:研究人员在幸福感和生活质量的定量指标方面,对在线护理人员干预的有效性应保持适度。然而,在线工具有可能促进日常生活中的照顾者过程。吸取的经验教训包括在电子健康中利用人类互动力量的重要性,利用用户的社会资本,以及需要开发研究方法,以确定对护理人员在生态上有效的日常生活中的益处。
背景:荷兰试验注册NTR6131;https://trialsearch。谁。int/Trial2。aspx?试验ID=NTR6131。
未经批准:RR2-10.1186/s13063-017-2097-y。
BACKGROUND: Informal care for people with dementia not only affects the well-being of the primary caregiver but also changes their roles and interactions with the social environment. New online interventions might facilitate access to social support. Recently, an online social support platform, Inlife, was developed in the Netherlands and aims to enhance social support and positive interactions in informal support networks.
OBJECTIVE: This study aimed to evaluate the effectiveness of Inlife for caregivers of people with dementia.
METHODS: A randomized controlled trial with 96 caregivers of people with dementia was performed. Participants were randomly assigned to the Inlife intervention or the waiting list control group. After 16 weeks of Inlife use, the waiting list control group could start using Inlife. Effects were evaluated at baseline (T0), 8 weeks (T1), and 16 weeks (T2). The 16-week follow-up assessment (T2) served as the primary endpoint to evaluate the results for the primary and secondary outcome variables evaluated with online self-report questionnaires. The primary outcomes included feelings of caregiver competence and perceived social support. The secondary outcomes included received support, feelings of loneliness, psychological complaints (eg, anxiety, stress), and quality of life.
RESULTS: No significant improvements were demonstrated for the intervention group (n=48) relative to the control group (n=48) for the primary outcomes (feeling of carer competence: b=-0.057, 95% CI -0.715 to 0.602, P=.87; perceived social support: b=-15.877, 95% CI -78.284 to 46.530, P=.62) or any secondary outcome. This contrasts with our qualitative findings showing the potential of Inlife to facilitate the care process in daily life. Adherence was not optimal for all Inlife users. Additional per-protocol and sensitivity analyses also revealed no beneficial results for high active Inlife users or specific subgroups. Inlife users were more active when part of a larger network.
CONCLUSIONS: Researchers should be modest regarding the effectiveness of online caregiver interventions in terms of quantitative measures of well-being and quality of life. Nevertheless, online tools have the potential to facilitate the caregiver process in daily life. Lessons learned include the importance of harnessing the power of human interaction in eHealth, making use of the user\'s social capital, and the need to develop research methods that can identify benefits in daily life that are ecologically valid for caregivers.
BACKGROUND: Netherlands Trial Register NTR6131; https://trialsearch.who.int/Trial2.aspx?TrialID=NTR6131.
UNASSIGNED: RR2-10.1186/s13063-017-2097-y.