阿尔茨海默病主要家庭照顾者管理负担来源及其管理策略的质性研究

Sources of Management Burden and Solutions among Primary Family Caregivers of the Alzheimer's Disease Patient:a Qualitative Study

背景我国65岁以上阿尔茨海默病的患病率为5.14%,是老年人的常见疾病,给其主要家庭照顾者带来巨大的管理负担,受到了国内外的广泛关注。目的了解阿尔茨海默病主要家庭照顾者管理负担来源及其家庭管理策略的主要方法,为进一步制定阿尔茨海默病家庭管理体系提供依据。方法采用目的性抽样法,选取2018年9-12月在杭州市第七人民医院和浙江省中医院门诊复查的12例阿尔茨海默病的主要家庭照顾者为研究对象。运用质性研究中现象学的研究方法,对阿尔茨海默病主要家庭照顾者进行深度访谈,采用Colaizzi的现象学资料7步分析法进行资料分析。结果经过比对分析,阿尔茨海默病主要家庭照顾者管理负担来源共析出5个亚主题:患者病情复杂,缺乏照顾知识;社交性负担;情感性负担;身体性负担;照顾努力不被肯定与欣赏。家庭管理策略共析出照顾者自我管理策略、患者家庭管理策略2个主题,以及理性接受、主动迁就等6个亚主题。结论社会及医务人员需为主要家庭照顾者提供有效的情感性支持,普及照护知识,以形成有效的家庭管理策略,同时,完善多元长期照护体系,减轻照顾负担。

Background Alzheimer's disease is commonly seen in older people in China,in particular,its prevalence reaches 5.14%in those aged over 65 years,bringing huge management burden to primary family caregivers of the patient.It has received extensive attention worldwide.Objective To investigate the sources of management burden and major solutions among primary family caregivers of the Alzheimer's disease patient,providing a basis for further development of the family management system for such patients.Methods By use of purposive sampling,the primary family caregivers of 12 reexamined outpatients with Alzheimer's disease were recruited from Hangzhou Seventh People's Hospital and Zhejiang Provincial Hospital of TCM from September to December 2018 were recruited,and were interviewed intensively using a phenomenological approach.Colaizzi's seven-step analysis was performed to analyze the interview results.Results Five subthemes of management burden sources of the primary family caregivers for the Alzheimer's disease patient were summarized as follows:lack of sufficient care knowledge to cope with the patient's complex conditions,social burden,emotional burden,physical burden and unappreciated care.For the solutions to the management burden,two themes of caregiver self-management strategies and patient family management strategies with six subthemes such as rational acceptance and active accommodation and so on arose.Conclusion Medical professionals and others need to provide effective emotional support and adequate care knowledge for primary family caregivers for the Alzheimer's disease patient to help them form effective family management strategies.At the same time,the diversified long-term care system should be improved to reduce the burden of care.