Disease experience of children with transition nephrotic syndrome: a qualitative study
10.3760/cma.j.cn115682-20231029-01742
- VernacularTitle:成长过渡期肾病综合征患儿疾病体验的质性研究
- Author:
Xuan ZHAO
1
;
Anwei XIE
;
Feng MIAO
;
Yiming ZHANG
;
Zhongqin HONG
;
Li CAI
Author Information
1. 苏州大学附属儿童医院肾脏免疫科，苏州 215003
- Keywords:
Adolescent;
Transitional care;
Disease experience;
Psychological feeling;
Qualitative research
- From:
Chinese Journal of Modern Nursing
2024;30(18):2403-2409
- CountryChina
- Language:Chinese
-
Abstract:
Objective:To gain a deep understanding of the disease experience of children with transition nephrotic syndrome, so as to provide a reference for developing targeted nursing measures and improving coping abilities in clinical practice.Methods:This study was a phenomenological study. From May to June 2023, a semi-structured interview was conducted using purposive sampling method to select children with transition nephrotic syndrome ( n=13) who received outpatient or inpatient treatment at Children's Hospital of Soochow University. Colaizzi 7-step method was used to analyze interview data and extract themes. Results:The disease experience of children with transition nephrotic syndrome were summarized into five themes, including inadequate disease self-management ability (lack of disease cognition and management knowledge, weak self-management awareness), excessive disease-related burden (significant academic impact, frequent adverse drug reactions, and heavy self-perceived burden), increased fear of negative evaluation, tense parent-child relationships, and growth and gain (feeling the care of others and achieving self-growth) .Conclusions:Children with transition nephrotic syndrome experience various challenges brought by growth, development, and disease, with heavy disease burden and psychological pressure. Medical and nursing staff should closely monitor children's emotional and psychological changes, value their disease experience, provide targeted psychological counseling and support in a timely manner, and reduce their adverse disease experience.
