A qualitative study on treatment decision-making experiences of primary caregivers of children with difficult-to-treat nephrotic syndrome.

PURPOSE: This study focuses on difficult-to-treat nephrotic syndrome (DTNS), a condition that imposes severe physical and psychological burdens on patients and their families, to assess the experiences and psychological states of primary caregivers during the treatment decision-making process.

METHODS

We conducted semi-structured, in-depth interviews with 15 primary caregivers of children with difficult-to-treat nephrotic syndrome at a tertiary women's and children's hospital in China and analyzed the verbatim transcripts using inductive thematic analysis.

RESULTS

The primary caregivers had a mean age of 36 years, with approximately 73% being female; the children's average disease duration was 6 years, and 95% of families reported inadequate knowledge about the disease. Although 80% of families adopted combined immunosuppressive therapy, only 20% expressed satisfaction with the effectiveness of the treatment regimens. In the analysis of drug effects, 70% of caregivers believed that glucocorticoid therapy had significant efficacy, but 40% of families reported serious adverse effects that affected the child's quality of life; approximately 60% of caregivers mentioned a markedly increased infection risk associated with immunosuppressants; 75% of primary caregivers experienced considerable psychological pressure; and 60% exhibited emotional fluctuations when the condition relapsed.

CONCLUSION

The findings reveal multiple challenges faced by caregivers in coping with DTNS, emphasizing the importance of information access, decision-making support for treatment, and psychological health services. Future research should explore effective strategies to improve support systems for patients and families, thereby enhancing clinical treatment quality and patient quality of life.