"We Don't Feel so Alone": A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19.
"We Don't Feel so Alone": A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19.
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DOI：
10.3389/fpubh.2021.660144
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发表时间：
2021
影响因子：
5.2
通讯作者：
White CL
中科院分区：
文献类型：
--
作者：
Masoud SS;Meyer KN;Martin Sweet L;Prado PJ;White CL
介绍：孤独和低社会支持可能对阿尔茨海默氏症和相关痴呆症（ADRD）患者及其家庭护理伙伴的健康有害。为防止COVID-19传播而限制聚会，会造成更大的社会隔离风险。记忆咖啡馆是一个高度复制的计划，为ADRD患者和护理伙伴提供一个在包容和支持性环境中社交的机会，而不必担心判断，压力或耻辱。在限制面对面聚会之后，虚拟记忆咖啡馆以在线形式提供定期社交机会。虽然记忆咖啡馆模型已在全球范围内复制，但它们对孤独感和感知社会支持的影响通常是未知的。在虚拟环境中操作时，对其影响的了解更少。研究方法：用西班牙语和英语进行了半结构化访谈，访谈对象是痴呆症患者和家庭护理合作伙伴，他们定期参加由德克萨斯州记忆咖啡馆网络合作伙伴主办的记忆咖啡馆。访谈是使用视频会议软件在线进行的，被转录，然后使用归纳和演绎相结合的方法分析共同的主题。结果如下：共对参加记忆咖啡馆的痴呆症患者（n = 5）和家庭护理伙伴（n = 12）进行了17次访谈，以了解他们自COVID-19以来对社会联系的感知体验。护理伙伴包括配偶（n = 8）和成年子女（n = 4）。访谈包括不同Memory Café模型的参与者，包括仅亲自参与（n = 2），仅虚拟参与（n = 9）以及同时参与两种模型的参与者（n = 6）。确定了五个关键主题：（1）暂缓;（2）仍有可能;（3）连通性;（4）包容性;（5）增值，并有十个分主题支持这些主题。讨论内容：研究结果证实了记忆咖啡馆为痴呆症家庭提供重要益处的证据，为虚拟记忆咖啡馆提供类似益处的潜力提供了重要的新见解。研究结果的影响超出了COVID-19的范围，虚拟模型可以支持那些生活在地理边缘化和服务不足地区的人的社会联系。虚拟模型可能无法满足所有患有痴呆症的家庭的需求，因为缺乏技术以及与那些患有晚期痴呆症的人进行虚拟参与的限制。
Introduction: Loneliness and low social support can be detrimental to the health of individuals living with Alzheimer's and related dementias (ADRD) and family care partners. Restrictions on gatherings to prevent the spread of COVID-19 create an even greater risk for social isolation. Memory Cafés are a highly replicated program that provide individuals living with ADRD and care partners an opportunity to socialize in an inclusive and supportive environment without fear of judgment, pressure, or stigma. Following restrictions on in-person gatherings, virtual Memory Cafés offer regular social engagement opportunities in an online format. While the Memory Café model has been replicated globally, their effects on loneliness and perceived social support are generally unknown. Even less is known about their impact when operating in a virtual environment. Methods: Semi-structured interviews in Spanish and English were conducted with individuals living with dementia and family care partners who regularly attend Memory Cafés hosted by partners in a Texas Memory Café Network. Interviews took place online using video conferencing software, were transcribed, then analyzed for common themes using a combined inductive and deductive approach. Results: A total of 17 interviews were conducted with persons living with dementia (n = 5) and family care partners (n = 12) who attend Memory Cafés to learn about their perceived experiences of social connectedness since COVID-19. Care partners included spouses (n = 8) and adult children (n = 4). Interviews included attendees of different Memory Café models, including in-person only (n = 2), virtual only (n = 9), and those who attend both models (n = 6). Five key themes were identified: (1) Reprieve; (2) What is still possible; (3) Connectedness; (4) Inclusivity; and (5) Value added, with ten sub-themes supporting these main themes. Discussion: Findings substantiate evidence that Memory Cafés offer important benefits for families living with dementia, providing vital new insight into the potential for virtual Memory Cafés to offer similar benefits. Findings have implications beyond the context of COVID-19, where virtual models may support the social connectedness of those living in geographically marginalized and underserved areas. Virtual models may not address the needs of all families experiencing dementia due to lack of access to technology and limitations for virtual engagement with those experiencing later stage dementia.
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