Peckham Allie, Guest M Aaron, Pituch Keenan, Hook Jane, Mporanyi Marlene Umubyeyi, Sadow Sage
Center for Innovation in Healthy and Resilient Aging, Arizona State University, Phoenix, Arizona, USA.
Center for Innovation in Healthy and Resilient Aging, Arizona State University, Phoenix, Arizona, USA
BMJ Open. 2025 Feb 16;15(2):e090528. doi: 10.1136/bmjopen-2024-090528.
Unpaid caregivers of people living with dementia often experience lower levels of perceived life satisfaction and higher rates of depression and anxiety compared with those caring for individuals without Alzheimer's disease or related dementias. While research on unpaid caregiver well-being and satisfaction has primarily focused on the characteristics of people living with dementia and their dyadic relationships, it has not adequately explored the role of social networks in supporting unpaid caregiver well-being. In this study, we aim to fill this gap by taking an egocentric social network approach to understand the multiple dimensions of social relations among unpaid caregivers of people living with Alzheimer's disease or related dementia.
We will conduct a mixed-method, 2-year exploratory study that involves a structured survey-based telephone interview in year 1 and semistructured interviews in year 2 with caregivers of PLWD recruited through community and healthcare partners. Participants will participate in 1 60-min interview in year 1 (n=100) and a 45-60 min semistructured interview in year 2 (n=75). Eligibility for caregivers includes being an unpaid caregiver, aged 40 years or older, residing and providing care in Arizona or Nevada. The survey consists of questions about caregiver and care recipient demographics, caregiver background, caregiver stress, resilience, well-being and egocentric social network data. Network composition attributes, such as tie strength, the function of the relationship and reliance on network members, will also be assessed. In year 2, qualitative semistructured interviews will supplement these quantitative measures to understand network selection, perceived network changes over time and network strength.
The Arizona State Institutional Review Board (00018191) approved this study. All participants will receive electronic informed consent documents to review and sign. During the initial interview, participants will be asked if they have any questions about the informed consent documents. We will confirm that participants have completed the required consent form before the start of any research activity. The findings of this study will be disseminated through peer-reviewed journal articles, academic and community presentations, and community-focused publications targeting caregivers.
与照顾没有阿尔茨海默病或相关痴呆症患者的人相比，痴呆症患者的无偿照护者往往感受到较低的生活满意度，且抑郁和焦虑发生率更高。虽然关于无偿照护者幸福感和满意度的研究主要集中在痴呆症患者的特征及其二元关系上，但尚未充分探讨社交网络在支持无偿照护者幸福感方面的作用。在本研究中，我们旨在通过采用以自我为中心的社交网络方法来填补这一空白，以了解阿尔茨海默病或相关痴呆症患者的无偿照护者之间社会关系的多个维度。
我们将开展一项为期两年的混合方法探索性研究，第一年进行基于结构化调查的电话访谈，第二年对通过社区和医疗合作伙伴招募的痴呆症患者照护者进行半结构化访谈。参与者将在第一年参加一次60分钟的访谈（n = 100），在第二年参加一次45 - 60分钟的半结构化访谈（n = 75）。照护者的入选条件包括为无偿照护者、年龄40岁及以上、居住在亚利桑那州或内华达州并提供照护。该调查包括有关照护者和受照护者人口统计学、照护者背景、照护者压力、恢复力、幸福感以及以自我为中心的社交网络数据的问题。还将评估网络组成属性，如关系强度、关系功能以及对网络成员的依赖程度。在第二年，定性半结构化访谈将补充这些定量测量，以了解网络选择、随时间感知到的网络变化以及网络强度。
亚利桑那州立大学机构审查委员会（00018191）批准了本研究。所有参与者将收到电子知情同意文件以供审查和签署。在初次访谈期间，将询问参与者是否对知情同意文件有任何疑问。在任何研究活动开始前，我们将确认参与者已完成所需的同意表格。本研究的结果将通过同行评审的期刊文章、学术和社区报告以及针对照护者的社区聚焦出版物进行传播。
