Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Alfred Nobels Allé 23, Huddinge, 141 52, Sweden.
Department of Nursing, Sophiahemmet University, Valhallavägen 91, Stockholm, 11428, Sweden.
BMC Geriatr. 2024 Jun 14;24(1):519. doi: 10.1186/s12877-024-05106-x.
The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group.
The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life.
A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves.
Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system.
ISRCTN registry, Registration number ISRCTN64235563.
瑞典大多数痴呆症患者都在家中居住，由家庭成员提供支持。大约有 12%的痴呆症患者具有移民背景。在未来 20 年内，非瑞典裔的痴呆症患者数量预计将翻一番。具有移民背景的家庭照顾者在社区中获得的支持比瑞典裔家庭照顾者要少，并且他们的健康状况自评也比瑞典裔同龄人差。瑞典国家卫生福利委员会强调了为具有移民背景的家庭照顾者提供后续支持的重要性，因为针对这一群体的研究和可用信息存在明显差距。
本研究旨在通过基于移动健康的干预措施来测试社区社会工作者提高瑞典居家痴呆症患者的非欧洲移民家庭照顾者的照顾能力的效果。主要目标是减轻照顾者负担和抑郁症状，提高生活质量。
将进行一项随机对照试验（RCT），包括等待名单对照组，包括干预组（A 组，n=44）和等待名单对照组（B 组，n=44），总样本量为 88 人。在干预组完成为期 10 周的干预后，将对 B 组进行干预。将分析干预前后和组内随时间的效果。干预的教育组成部分的内容受到世界卫生组织开发的 iSupport 手册的启发。该内容以手册的形式旨在为家庭照顾者提供有关痴呆症作为一种疾病的理解以及在家中管理的结构化信息，包括专为家庭照顾者自己设计的自我护理指导。
正在马来西亚为痴呆症患者的家庭照顾者进行类似的电话干预研究，并将在印度开始使用相同的适应当地情况的手册。这些研究将提供有关使用数字技术为那些可能无法通过传统医疗系统获得或充分服务的人提供支持的有效性的证据。
ISRCTN 注册，注册号 ISRCTN64235563。
