Kwok Ian, Lattie Emily Gardiner, Yang Dershung, Summers Amanda, Cotten Paul, Leong Caroline Alina, Moskowitz Judith Tedlie
Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
BrightOutcome, Buffalo Grove, IL, United States.
JMIR Form Res. 2024 Apr 25;8:e50234. doi: 10.2196/50234.
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.
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.
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.
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.
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.
阿尔茨海默病是一种需要长期护理的退行性神经疾病。这些护理责任的费用通常由非正式护理人员承担，他们面临负面身体和心理后果的风险更高。此前，我们设计了一种积极情绪调节干预措施，通过与训练有素的协调员进行一对一视频会议课程来实施，结果显示该措施可改善痴呆症护理人员的幸福感。然而，这种形式在后勤和协调员时间方面需要大量资源。为了扩大干预措施的覆盖范围，我们旨在开发“家庭护理人员生活增强活动自我引导电子交付的社交增强”（SAGE LEAF）项目，这是该干预措施的一个迭代版本，采用自我引导的基于网络的形式，并增加了社交联系的机会。
本研究的目的是收集反馈意见，为SAGE LEAF干预措施的社交功能设计提供参考。在没有协调员的情况下，我们针对自我引导的SAGE LEAF干预措施的目标是整合各种社交功能（如讨论板、自动支持和个人资料），以最大限度地提高参与者的参与度。
通过以下方式从26个人那里收集定性数据：（1）对通过与协调员进行视频会议完成了前一版本干预措施的参与者进行访谈；（2）与之前未经历过该干预措施的痴呆症护理人员进行焦点小组讨论；（3）与阿尔茨海默病临床护理提供者进行焦点小组讨论。我们进行了定性主题分析，以确定哪些社交功能最有帮助，以及如何以护理人员最能接受的方式实施这些功能。
访谈和焦点小组反馈表明，参与者普遍喜欢所建议的潜在功能，包括讨论板、多媒体内容和信息支持。他们对最佳实施方式提出了有价值的建议。例如，参与者喜欢伙伴系统的想法，即在研究期间他们将与另一位护理人员配对。然而，他们对护理人员之间不同的期望以及配对的护理人员相处不来的可能性表示担忧。参与者还表示有兴趣让护理人员能够收听关于这些技能的播客，这将使他们能够在需要时回顾更多内容。
总体而言，与护理人员和提供者的讨论为可能整合到SAGE LEAF干预措施中的社交功能类型提供了独特见解，以及提高护理人员对这些功能接受度的实施建议。这些见解将使我们能够为该干预措施设计出对护理人员最具吸引力且最有帮助的社交功能。
