Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study

Abstract

Purpose

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

Acknowledgments

The authors would like to thank the parents who participated in this study and completed the interviews.

Disclosure

There are no conflicts of interest reported by the authors.

Additional information

Funding

This work was supported by Nantong University Natural Science Cross-disciplinary Project (Grant No.23ZH313), Shanghai Jiao Tong University Medical School Science and Technology Fund Project (Grant No. Jyh2106), Research Project of Nantong Municipal Health Commission (Grant No. MS2022009), 2023 Shanghai Children’s Hospital Hospital-level Project Nursing special (Grant No.2023HLZX06). Study sponsors were not involved in the design, collection, analysis, or interpretation of data, writing of the manuscript, or submission of the manuscript for publication of the study.