Hu Xinmiao, Wu Qian, Lu Qunfeng, Zhang Jiangao, Yang Xiaowei, Chen Wenjian, Wang Ping, Yu Qinglin, Dong Jingan, Sang Yan
School of Medicine, Tong University, Shanghai, People's Republic of China.
Department of Nursing, Shanghai Tenth People's Hospital Affiliated to Tongji University, Shanghai, People's Republic of China.
J Multidiscip Healthc. 2023 Dec 2;16:3749-3759. doi: 10.2147/JMDH.S413677. eCollection 2023.
To identify the difficulties and burdens related to the experience of caring for children.
A phenomenological approach was used in this qualitative study. Semi-structured and adolescents with idiopathic nephrotic syndrome (INS) in mainland China. Interviews lasting 35-90 minutes were conducted with 13 parental caregivers of youth with INS. The Colaizzi's analysis was used in data analysis.
The mean age of parental caregivers was 40.3 ± 6.1 years, and the average caregiving year of 3.2 ± 3.3 years. Most INS patients were male (69.2%), had a mean age of 7.6 ± 4.2 years. Based on the analysis of the data, five major themes emerged. These were: persistent emotional burden; neglected physical burden; overwhelming financial burden; absence of social support system and burden related to loss of normal life.
Health professionals must develop strategies to provide stage-by-stage, targeted health education and psychological support services to parental caregivers of INS youth in China. The government must subsidize routine medications and frequent hospitalizations to minimize the financial burden on parental caregivers of INS youth. Moreover, anti-discrimination policies must be established to protect caregivers from explicit discrimination in public places.
识别与照顾儿童经历相关的困难和负担。
本定性研究采用现象学方法。对中国大陆患有特发性肾病综合征（INS）的青少年及其父母进行半结构化访谈。对13名INS青少年的父母照顾者进行了时长35 - 90分钟的访谈。数据分析采用了科莱齐分析法。
父母照顾者的平均年龄为40.3±6.1岁，平均照顾年限为3.2±3.3年。大多数INS患者为男性（69.2%），平均年龄为7.6±4.2岁。基于数据分析，出现了五个主要主题。它们分别是：持续的情感负担；被忽视的身体负担；巨大的经济负担；社会支持系统的缺失以及与正常生活丧失相关的负担。
卫生专业人员必须制定策略，为中国INS青少年的父母照顾者提供分阶段、有针对性的健康教育和心理支持服务。政府必须补贴常规药物治疗和频繁住院费用，以减轻INS青少年父母照顾者的经济负担。此外，必须制定反歧视政策，保护照顾者在公共场所免受明显歧视。
