Supportive care needs of families of children with retinoblastoma: a qualitative study
10.3760/cma.j.cn115682-20240111-00233
- VernacularTitle:视网膜母细胞瘤患儿家属支持性照护需求的质性研究
- Author:
Xiaoxiao YANG
1
;
Jinghua LIU
;
Zhangfang MA
;
Wanxia ZHANG
;
Ya WANG
;
Jing ZHANG
;
Yuanyuan ZHANG
Author Information
1. 首都医科大学附属北京同仁医院眼科中心，北京 100730
- Keywords:
Retinoblastoma;
Pediatric patients;
Family member;
Supportive care needs;
Qualitative research
- From:
Chinese Journal of Modern Nursing
2024;30(31):4224-4228
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To gain a deep understanding of the supportive care needs of families of children with retinoblastoma (RB) through qualitative research.Methods:From March to May 2022, a semi-structured interview was conducted using purposive sampling to select the family members of 15 RB children in the Department of Eye Tumor of Beijing Tongren Hospital affiliated to Capital Medical University. Colaizzi 7-step analysis method was used to refine, extract, and analyze interview data.Results:The supportive care needs of the families of RB children were summarized into three themes and six sub-themes, namely, psychological needs (emotional listening and psychological support), knowledge needs (disease knowledge needs, children's post discharge guidance, internet resource needs), and economic needs (social resource integration) .Conclusions:RB, as a malignant eye tumor, often brings a heavy burden to families. Family members of children generally experience negative emotions such as anxiety and depression, as well as a lack of knowledge. The economic burden on families is heavy, and there is a high demand for supportive care. The supportive care program for families of RB children is not yet perfect, and nurses should provide emotional support and professional assistance to the families, providing help and guidance in psychological counseling, knowledge needs, economic assistance, and other aspects.
