Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, United States.
Department of Electrical Engineering and Computer Science, Vanderbilt University, Nashville, TN, United States.
JMIR Aging. 2024 May 31;7:e55169. doi: 10.2196/55169.
Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users.
We aimed to investigate the perceptions and utilization of online peer support through a survey.
Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support.
We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%).
Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.
非专业痴呆症护理人员是指那些照顾患有痴呆症的人的人员，且他们不收取报酬（例如，家庭成员、朋友或其他无报酬的护理人员）。这些非专业痴呆症护理人员承受着巨大的心理、身体和经济负担。在线社区使这些护理人员能够交流护理策略并与他们在现实生活中通常不认识的其他护理人员交流经验。研究表明，在线社区中的同伴支持具有益处，但这项研究是有限的，仅关注已经是在线社区用户的护理人员。
我们旨在通过调查研究来探究对在线同伴支持的认知和使用情况。
我们遵循 Andersen 和 Newman 的卫生服务利用框架，并使用 REDCap（研究电子数据捕获），设计并管理了一项调查，以研究非专业痴呆症护理人员对在线同伴支持的认知和使用情况。具体来说，我们收集了影响非专业痴呆症护理人员是否使用在线同伴支持的信息类型：倾向因素，是指护理人员的社会文化特征、护理人员与患有痴呆症的人之间的关系以及对在线同伴支持价值的信念；促成因素，是指获取在线同伴支持的逻辑方面（例如，电子健康素养和高速互联网接入）；需要因素，是寻求在线同伴支持的最直接原因。我们还收集了护理人员使用在线社区的经验数据。我们于 2022 年 11 月 14 日在两个在线位置（阿尔茨海默氏症协会网站（作为广告）和 ALZConnected（由阿尔茨海默氏症协会组织的在线社区））发布了调查链接。我们于 2023 年 2 月 23 日收集了所有回复，并进行了回归分析以确定与获取在线同伴支持相关的因素。
我们从 172 名痴呆症护理人员那里收集了回复。在这些参与者中，有 140 人（81.4%）完成了整个调查。这些护理人员年龄为 19 至 87 岁（平均 54 岁，标准差 13.5），大多数为女性（123/140，87.9%）和白人（126/140，90%）。我们的研究结果表明，参与任何在线社区的行为与参与者对在线同伴支持价值的信念显著相关（P=.006）。此外，在 40 名非在线社区护理人员中，有 33 名（83%）的信念得分高于 24 分-这是在对每个信念问题选择中立选项时分配的分数。不参与任何在线社区的最常见原因是没有时间（140 名中的 14 名，10%）和在线信息搜索技能不足（140 名中的 9 名，6.4%）。
我们的研究结果表明，在线同伴支持是有价值的，但需要制定切实可行的策略来帮助那些时间有限或在线信息搜索技能不足的非专业痴呆症护理人员。
