肌萎缩侧索硬化症患者家庭照顾者照顾体验质性研究的Meta整合

Care experience of family caregivers for patients with amyotrophic lateral sclerosis:a Meta-synthesis of qualitative research

目的系统评价肌萎缩侧索硬化症(ALS)患者家庭照顾者的照顾体验,为更好地开展ALS患者居家照顾提供指导。方法检索PubMed、American Psychological Association Psycnet、CINAHL、Web of Science、Medline、Cochrane Library、Embase、中国生物医学文献数据库、万方数据库、维普网和中国知网中关于ALS患者家庭照顾者照顾体验的质性研究,检索时限为建库至2022年10月30日。采用澳大利亚乔安娜布里格斯循证卫生保健中心的质性研究评价标准(2016版)评价文献质量,使用NVivo 11软件通过汇集性整合方法整合结果。结果共纳入11项研究,提炼出22个完整明确的结果,归纳组合后形成8个新的类别,整合成3个结果,分别为家庭照顾者面临个人的发展受限及家庭的多种困境、经历复杂混乱的情绪体验、渴望获得多元化照护支持。结论护理人员应关注ALS对其患者家庭照顾者产生的影响,为家庭照顾者提供照顾知识和技能指导,促进积极情绪体验,提供多元化的照护支持,以提升患者及家庭照顾者的生活质量。

Objective To systematically evaluate the care experience of family caregivers for amyotrophic lateral sclerosis(ALS)patients,providing guidance for home care of ALS patients.Methods Qualitative studies on the care experience of family caregivers for ALS patients were retrieved from PubMed,American Psychological Association Psychnet,CINAHL,Web of Science,Medline,Cochrane Library,Embase,China Biology Medicine disc,WanFang Data,VIP,and China National Knowledge Infrastructure.The search period was from database establishment to October 30,2022.The quality of literature was evaluated using the quality evaluation criteria for qualitative research of the Australia Joanna Briggs Institute Evidence-Based Health Care Center(2016 edition).The aggregative integration method was used to integrate the results using NVivo 11 software.Results A total of 11 studies were included.A total of 22 complete and clear results were extracted and combined to form eight new categories,which were integrated into three results,namely,family caregivers facing personal development limitations and various family difficulties,experiencing complex and chaotic emotional experiences,and craving for diversified care support.Conclusions Nursing staff should pay attention to the impact of ALS on their patient's family caregivers,provide caregiver knowledge and skill guidance,promote positive emotional experiences,and offer diversified care support to improve the quality of life of patients and family caregivers.