| Summary: | Xinmiao Hu,1– 3,* Qian Wu,1,2,* Qunfeng Lu,4,5,* Jiangao Zhang,6 Xiaowei Yang,7 Wenjian Chen,3 Ping Wang,3 Qinglin Yu,3 Jingan Dong,3 Yan Sang8 1School of Medicine, Tong University, Shanghai, People’s Republic of China; 2Department of Nursing, Shanghai Tenth People’s Hospital Affiliated to Tongji University, Shanghai, People’s Republic of China; 3Department of Nephrology and Rheumatology, Shanghai Children’s Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, People’s Republic of China; 4Department of Nursing, Shanghai Sixth People’s Hospital Affiliated to Shanghai Jiao Tong University, Shanghai, People’s Republic of China; 5School of Medicine, Shanghai Jiao Tong University, Shanghai, People’s Republic of China; 6Nantong Visionland Eye Hospital, Jiangsu, People’s Republic of China; 7School of Medicine, Nantong University, Jiangsu, People’s Republic of China; 8Department of Nursing, Department of Computer Technology, Affiliated Hospital of Nantong University, Nantong, Jiangsu, People’s Republic of China*These authors contributed equally to this workCorrespondence: Yan Sang, Department of Computer Technology, Affiliated Hospital of Nantong University, No. 20 Xisi Road, Nantong, Jiangsu, 226001, People’s Republic of China, Tel +86 13862915051, Email sangyan_cn@126.comPurpose: To identify the difficulties and burdens related to the experience of caring for children.Methods: 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.Results: 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.Conclusion: 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.Keywords: caregiver, burden, idiopathic nephrotic syndrome, youth
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