背景:阿尔茨海默病是一种需要长期护理的退行性神经系统疾病。这些责任的费用往往由非正式的照顾者承担,经历负面身体和心理结果的风险升高。以前,我们设计了一种积极的情绪调节干预措施,通过与训练有素的主持人进行一对一的视频会议课程,该干预措施可改善痴呆症护理人员的幸福感.然而,该格式在后勤和主持人时间方面需要大量资源。为了扩大干预范围,我们的目标是发展家庭照顾者自我引导电子交付增强生活活动的社会增强(SAGELEAF)计划,自我指导的干预迭代,基于网络的格式,增加了社交联系的机会。
目的:本研究的目的是收集反馈,为SAGELEAF干预的社会特征设计提供信息。在没有主持人的情况下,我们使用自我指导的SAGELEAF干预的目标是整合各种社会特征(例如,讨论板,自动化支持,和配置文件),以最大限度地提高参与者之间的参与度。
方法:通过(1)与参与者的访谈,从26个人中收集了定性数据,这些参与者通过与主持人的视频会议完成了先前版本的干预,(2)以前没有经历过干预的痴呆照顾者的焦点组,(3)阿尔茨海默病临床护理提供者的焦点小组。我们进行了定性的主题分析,以确定哪些社会特征将是最有帮助的,以及如何以一种最能被护理人员接受的方式来实施。
结果:访谈和焦点小组反馈表明,参与者通常喜欢建议的潜在特征,包括讨论委员会,多媒体内容,和信息支持。他们对最佳实施提出了宝贵的建议。例如,参与者喜欢伙伴系统的想法,在研究期间,他们将与另一位护理人员相匹配。然而,他们对照顾者之间的不同期望以及匹配的照顾者不相处的可能性表示担忧.参与者还表示有兴趣让护理人员获得关于这些技能的播客,这将允许他们在他们希望的时候审查额外的内容。
结论:综合来看,与护理人员和提供者的讨论提供了对可能整合到SAGELEAF干预中的社会特征类型的独特见解,以及实施建议,以提高护理人员对功能的可接受性。这些见解将使我们能够为干预设计社交功能,这些功能对护理人员具有最佳的吸引力和帮助。
BACKGROUND: Alzheimer disease is a degenerative neurological condition that requires long-term care. The cost of these responsibilities is often borne by informal caregivers, who experience an elevated risk of negative physical and psychological outcomes. Previously, we designed a positive emotion regulation intervention that was shown to improve well-being among dementia caregivers when delivered through one-on-one videoconferencing lessons with a trained facilitator. However, the format required significant resources in terms of logistics and facilitator time. To broaden the reach of the intervention, we aimed to develop the Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF) program, an iteration of the intervention in a self-guided, web-based format with enhanced opportunities for social connection.
OBJECTIVE: The aim of this study was to gather feedback to inform the design of social features for the SAGE LEAF intervention. In the absence of a facilitator, our goal with the self-guided SAGE LEAF intervention was to integrate various social features (eg, discussion board, automated support, and profiles) to maximize engagement among participants.
METHODS: Qualitative data were collected from 26 individuals through (1) interviews with participants who completed a previous version of the intervention via videoconferencing with a facilitator, (2) focus groups with dementia caregivers who had not previously experienced the intervention, and (3) focus groups with Alzheimer disease clinical care providers. We conducted a qualitative thematic analysis to identify which social features would be the most helpful and how they could be implemented in a way that would be best received by caregivers.
RESULTS: Interview and focus group feedback indicated that participants generally liked the potential features suggested, including the discussion boards, multimedia content, and informational support. They had valuable suggestions for optimal implementation. For example, participants liked the idea of a buddy system where they would be matched up with another caregiver for the duration of the study. However, they expressed concern about differing expectations among caregivers and the possibility of matched caregivers not getting along. Participants also expressed interest in giving caregivers access to a podcast on the skills, which would allow them to review additional content when they wished.
CONCLUSIONS: Taken together, the discussions with caregivers and providers offered unique insights into the types of social features that may be integrated into the SAGE LEAF intervention, as well as implementation suggestions to improve the acceptability of the features among caregivers. These insights will allow us to design social features for the intervention that are optimally engaging and helpful for caregivers.