摘要目的 了解轻度认知障碍(MCI)患者家庭照顾者在照护过程中的真实生活体验,为减轻家庭照顾者负担提供依据.方法 采用目的抽样法,选取于2017年3月—2018年3月在宁波大学医学院附属医院神经内科、康复科及记忆门诊接受治疗的18名社区MCI患者家庭照顾者为研究对象.采用质性研究中的现象学方法——半结构式访谈收集资料,用Colazzi分析法对资料进行整理、分析、提炼主题.结果 社区MCI患者家庭照顾者真实生活体验可提炼为4个主题:家庭照顾者对疾病认知不足(恐惧与担忧、病耻感)、家庭照顾者照护过程中承受压力较大、妥协并积极面对、期望寻求更多的社会支持(渴望学习疾病相关知识、希望亲属理解和帮助、获得社区更多支持、环境支持).结论 社区MCI患者照护工作给其家庭照顾者生活造成负性影响,医护人员、家庭成员、社区组织需要提供多途径的支持,以减轻社区MCI患者家庭照顾者的心理压力和社会经济负担,从而有效提高其生活质量.

abstractsObjective To explore the real life experience of family caregivers among mild cognitive impairment (MCI) patients during health care so as to provide a reference for reducing family caregivers burden.Methods From March 2017 to March 2018,we selected 18 family caregivers of community MCI patients in Department of Neurology,rehabilitation and memory outpatient at the Affiliated Hospital of Medical School of Ningbo University as subjects by purposive sampling.Semi-structured interview,a phenomenological approach of qualitative research,was used to collect data,and Colazzi analysis was used to sort out,analyze data and refine theme.Results A total of four themes in real life experience of family caregivers of community MCI patients were extracted including family caregivers lacking knowledge about disease (fear,worry and stigma),family caregivers being with high pressure during health care,compromising and confronting actively,expecting to seek more social supports (eager to learn disease-related knowledge,hope to get relatives' understanding and help,gain community supports and environmental supports).Conclusions Community MCI health care brings negative influences on life of family caregivers.Medical staff,family members and community organization need to provide multi-path support to reduce mental pressure and social economic burden of family caregivers of community MCI patients so as to improve their quality of life.