Caregivers' attitudes toward their family members' participation in Alzheimer disease research: Implications for recruitment and retention
Caregivers' attitudes toward their family members' participation in Alzheimer disease research: Implications for recruitment and retention
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DOI：
10.1097/00002093-200107000-00005
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发表时间：
2001-07-01
影响因子：
2.1
通讯作者：
Foster, NL
中科院分区：
文献类型：
--
作者：
Connell, CM;Shaw, BA;Foster, NL
目前参与阿尔茨海默病（AD）研究的水平还不够，特别是在非白人中。本研究旨在调查护理人员对其家庭成员参与 AD 研究的态度。对参加临床研究项目的参与者的 38 名白人和 12 名非裔美国护理人员进行了 6 次焦点小组访谈。白人和非裔美国家庭都参与研究，以帮助他们的照顾者和后代，获得临床和研究人员的支持，并获得有关患者状况和研究结果的反馈。在白人护理人员中，参与研究的主要障碍包括可能没有直接益处、所涉及的程序和测试存在问题、缺乏时间和资源以及难以接受诊断。在非裔美国护理人员中，主要障碍包括对研究过程的普遍怀疑以及对医疗和寻求帮助的坚定态度，这些都阻碍了研究参与。为了最大限度地发挥研究参与的好处，潜在参与者应该能够定期与工作人员进行个人接触，了解有关护理接受者健康状况变化的信息，以及他们参与的研究的短期和长期结果。此外，研究人员应该对可能成为参与障碍的担忧保持敏感，特别是在非裔美国人中。
Current levels of participation in Alzheimer disease (AD) research are inadequate, particularly among nonwhites. This study was conducted to examine caregivers' attitudes toward their family members' participation in AD research. Six focus group interviews were conducted with 38 white and 12 African-American caregivers of participants enrolled in clinical research projects. Both white and African-American families participated in research to help their care recipients and future generations, receive support from the clinical and research staff, and obtain feedback about patient status and research results. Among white caregivers, primary barriers to participation in research included the potential for no direct benefit, problems with the procedures and tests involved, lack of time and resources, and difficulty accepting the diagnosis. Among African-American caregivers, primary barriers included general skepticism about the research process and firmly established attitudes about medical treatment and help seeking that serve as disincentives to research participation. To maximize the perceived benefits of research participation, potential participants should have access to regular personal contact with staff, information about health status changes in the care recipient, and the short-term and long-term results of the research studies in which they are participants. In addition, researchers should be sensitive to the concerns that may serve as barriers to participation, particularly among African Americans.