Xiao Nan Zhang, Shuo Zhang, Chun Yan Liu, Zhi Hong Ni, Hai Tao Lv
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引用次数: 0
摘要
背景:本研究旨在整合唐氏综合征儿童照料者在照料过程中的经验,了解其感受和需求。方法:我们使用Page等人(2021)的首选报告项目进行系统评价和综合声明。检索10个数据库(Web of Science、PubMed、EMBASE、Cochrane Library、CINAHL、PsycInfo、中国生物医学、中国国家知识基础设施、万方数据、中国科技期刊库)自建库至2023年10月发表的相关研究。对8项定性研究进行了分析。包括以下七个主题:“喂养压力”、“教育希望”、“社会排斥和耻辱”、“心理压力”、“照顾负担”、“家庭负担”和“家庭适应和自我成长”。结果:我们发现,喂养压力、教育问题、语言困难、歧视和污名化导致唐氏综合症儿童照顾者的心理、经济和家庭压力。我们记录了医疗和心理机构对这些家庭强有力的应对机制和支持系统的需求,以及公众教育和意识的需求。结论:总结了唐氏综合征患儿护理人员的日常护理经验。我们的研究结果为进一步研究减轻照顾者的身心压力和提高家庭生活质量提供了科学依据。
Caregivers' experience of having a child with Down syndrome: a meta-synthesis.
Background: This study aimed to integrate the experiences of caregivers of children with Down syndrome during the care process and understand their feelings and needs.
Methods: We used Page et al.'s (2021) Preferred Reporting Items for Systematic Reviews and Meta-synthesis Statement. Ten databases (Web of Science, PubMed, EMBASE, Cochrane Library, CINAHL, PsycInfo, China Biology Medicine, China National Knowledge Infrastructure, Wanfang Data, and China Science and Technology Journal Database) were searched for relevant studies published from the inception of the database to October 2023. Eight qualitative studies were analysed. The following seven themes were included: 'feeding pressure', 'hope for education', 'societal rejection and stigma', 'psychological pressure', 'caring burden', 'family burden', and 'family adaptation and self-growth'.
Results: We found that feeding pressures, educational concerns, language difficulties, and discrimination and stigmatisation led to psychological, economic, and family stress in caregivers of children with Down syndrome. We document the need for strong coping mechanisms and support systems for these families from medical and psychological institutions and a need for public education and awareness.
Conclusions: We summarised the daily care experiences of caregivers of children with Down syndrome. Our findings provide a scientific basis for further research focused on reducing physical and mental pressure on caregivers and improving the quality of family life.
期刊介绍:
BMC Nursing is an open access, peer-reviewed journal that considers articles on all aspects of nursing research, training, education and practice.