| 张莹,张玉蓉.囊性纤维化儿童父母生活照顾体验的质性研究[J].上海护理,2025,25(7): |
| 囊性纤维化儿童父母生活照顾体验的质性研究 |
| Qualitative study on the life care experience of parents of children with cystic fibrosis |
| 投稿时间：2024-10-25 修订日期：2025-07-03 |
| DOI： |
| 中文关键词: 囊性纤维化 儿童 父母 生活照顾；质性研究 |
| 英文关键词:cystic fibrosis Children Parents Life care Qualitative research |
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| 中文摘要: |
| 摘要:目的 深入了解囊性纤维化患儿父母的真实感受和需求，为针对性干预提供思考。方法 采用目的抽样法，对6名囊性纤维化儿童的父母进行半结构式访谈,采用 Colaizzi7步分析法分析、归纳、提炼主题。结果 囊性纤维化儿童父母生活照顾体验主要归纳为5个主题:生活负担沉重，压力倍增；负性情绪包裹，正向能量透支；孩子心理健康扭曲和行为异常/退缩；社会关注度薄弱，缺乏可靠支持；青春期到成年过渡阶段焦虑无措。结论 囊性纤维化是一种慢性疾病，需要长期治疗和随访，该病应受到社会各界的广泛关注和支持，多维度展示释放压力的方法，着重加强孩子心理疏导和提供情绪价值，并不断完善针对扩龄儿童相关医疗政策，让患病儿童和家长以积极、乐观、正向的态度面对疾病的治疗和照顾。 |
| 英文摘要: |
| Abstract: The purpose is to delve into the true feelings and needs of parents of children with cystic fibrosis, and provide thinking for targeted interventions. The method used purposive sampling to conduct semi-structured interviews with the parents of six children with cystic fibrosis. Colaizzi's 7-step analysis was used to analyze, summarize, and extract themes. The life care experience of parents of children with cystic fibrosis can be summarized into five main themes: heavy life burden and doubled pressure; Negative emotions envelop, positive energy overdrawn; Distorted mental health and abnormal behavior/withdrawal of children; Weak social attention and lack of reliable support; Anxiety and helplessness during the transition from adolescence to adulthood. Conclusion: Cystic fibrosis is a chronic disease that requires long-term treatment and follow-up. This disease should receive widespread attention and support from all sectors of society, and multidimensional methods for releasing stress should be demonstrated. Emphasis should be placed on strengthening children's psychological counseling and providing emotional value, and continuously improving medical policies for older children, so that affected children and parents can face the treatment and care of the disease with a positive, optimistic, and positive attitude. |
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