李玉鑫，王丽宁，马锐，李英丽，任高跃，张慧

引用本文： 李玉鑫，王丽宁，马锐，李英丽，任高跃，张慧.孤独症谱系障碍患儿父母照护体验的Meta整合[J].循证护理,2022,8(16):2150-2156

摘要： 目的：Meta整合孤独症谱系障碍(ASD)患儿父母的照护体验。方法：计算机检索PubMed、Web of Science、The Cochrane Library、EMbase、中国生物医学文献数据库、中国知网、维普数据库及万方数据库，收集关于ASD患儿父母真实照护体验的质性研究，检索时限均为建库至2021年1月31日。采用澳大利亚Joanna Briggs Institute(JBI)循证卫生保健中心质性研究质量评价标准对纳入研究进行质量评价，并按照Meta整合的方法对结果进行整合。结果：共纳入14项研究，提炼54个研究结果，归纳形成9个新类别，合成3个整合结果（父母承受巨大的身体、心理压力；缺少疾病知识并且不被家庭、社会所理解，渴望获得知识信息和他人支持；生活方式改变，努力调整以适应照护角色）。结论：现有证据表明，医护人员应了解ASD患儿父母的身体、心理反应及需求，给予必要的支持和指导，减轻父母生活压力，提高对患儿的照护质量。

关键词： 孤独症谱系障碍；儿童；父母；照护体验；质性研究；Meta整合；护理

LI Yuxin，WANG Lining，MA Rui,LI Yingli，REN Gaoyue，ZHANG Hui

Abstract Objective：To integrate parental care experience of children with autism spectrum disorder(ASD).Methods:Qualitative researches on the real experience of parents of children with ASD were retrieved from PubMed,Web of Science,the Cochrane Library,EMbase,CBM,CNKI,VIP and WanFang Database,the retrieval time was from inception to January 3021.The JBI Critical Appraisal Tool for qualitative studies in Australia was used to evaluate the quality of studies.The results were integrated according to the method of Meta synthesis.Results:A total of 14 studies were included,54 results were extracted,9 new categories were formed,and 3 integrated results were synthesized(parents bear great physical and psychological pressure;lack of disease knowledge and not understood by family and society,eager to obtain knowledge and information and support from others);lifestyle changes,efforts to adjust to the care role.Conclusion:Current evidence shows that medical staff should understand the physical and psychological reactions and the needs of parents of children with ASD,give necessary support and guidance,reduce parents′ life pressure,and improve the quality of care for children.

Keywords autism spectrum disorder;children;parent;care experience;qualitative research;Meta-synthesis;nursing

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