上海护理2025，Vol.25Issue(7)：15-19,5.DOI:10.3969/j.issn.1009-8399.2025.07.003
囊性纤维化儿童父母生活照顾体验及支持需求的质性研究
Qualitative Study on the Daily Care Experience and Support Needs of Parents of Children with Cystic Fibrosis
张莹 1张玉蓉1
作者信息
- 1. 复旦大学附属儿科医院,上海 201102
- 折叠
摘要
Abstract
Objective To gain an in-depth understanding of the real care experiences and needs of parents of children with cystic fibrosis,aiming to provide a reference for developing targeted interventions.Methods A total of 6 parents of children with cystic fibrosis were selected by purposive sampling.They were investigated by semi-structured interviews regarding their care experiences.Then,interview data were analyzed and summarized using Colaizzi's seven-step analysis method to extract topics.Results The care experience of parents of children with cystic fibrosis was summarized into five topics:1.heavy life burden and heightened stress;2.engulfment in negative emotions and depletion of positive energy;3.psychological distortions in children with abnormal behaviors and withdrawal;4.low social attention and lack of reliable support;5.anxiety and helplessness during the transition from adolescence to adulthood.Conclusion Cystic fibrosis is a chronic disease requiring long-term treatment and follow-up.We call on all sectors of society to give widespread attention and support to these patients and their families and provide multifaceted stress-relief strategies.Psychological counseling and emotional support should be enhanced for children.Additionally,medical policies should be continuously refined for children across various age groups,enabling patients and parents to maintain a positive and optimistic attitude toward disease treatment and care.关键词
囊性纤维化/儿童/父母/生活照顾/体验/需求/质性研究Key words
Cystic fibrosis/Child/Parent/Daily care/Experience/Need/Qualitative study分类
医药卫生引用本文复制引用
张莹,张玉蓉..囊性纤维化儿童父母生活照顾体验及支持需求的质性研究[J].上海护理,2025,25(7):15-19,5.
