Mapping the Care Journey of Children with Nephrotic Syndrome from Caregivers’ Perspectives: A Qualitative Study

Jing Liang,1,* Yingxue Lv,2,* Xiaoxue Wang,2 Hui Zhong31School of Nursing, Chifeng University, Chifeng, Inner Mongolia, People’s Republic of China; 2Pediatric Rheumatology, Immunology and Allergy and Pediatric Nephrology Nursing Platform, The First Hospital of Jilin University, Changchun, Jilin, People’s Republic of China; 3Dialysis Center, Department of Nephrology, The First Hospital of Jilin University, Changchun, Jilin, People’s Republic of China*These authors contributed equally to this workCorrespondence: Hui Zhong, Dialysis Center, Department of Nephrology, The First Hospital of Jilin University, No. 71 Xinmin Street, Chaoyang District, Changchun, Jilin, 130021, People’s Republic of China, Email [email protected]: Childhood nephrotic syndrome often follows a relapsing course requiring prolonged treatment, monitoring, and substantial family involvement. This study aimed to map the caregiver-informed care journey of children with nephrotic syndrome and examine how caregiving challenges and support needs changed across four phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management.Methods: A descriptive qualitative design incorporating caregiver-informed journey mapping was used. Semi-structured face-to-face interviews were conducted with 18 caregivers of children with nephrotic syndrome receiving inpatient treatment or follow-up care at a tertiary hospital in Jilin Province, China. Participants were recruited using purposive sampling with maximum variation. Nineteen interviews were audio-recorded, transcribed verbatim, and analyzed using framework-guided qualitative content analysis supported by NVivo 14. Data were independently analyzed by two researchers, and the journey map was refined through caregiver member checking.Results: The care journey comprised four interconnected phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management. Five cross-stage patterns emerged: uncertainty changed rather than disappeared; disease-management responsibility progressively shifted from professionals to families; burden varied according to health literacy, family resources, healthcare access, and disease complexity; caregivers negotiated between relapse prevention and preserving a normal childhood; and relapse created a recurrent, rather than linear, journey by reactivating uncertainty while sometimes strengthening experiential competence.Conclusion: Childhood nephrotic syndrome involves a dynamic family-care journey across hospital and home settings. Stage-responsive, capacity-sensitive, and family-centered support is needed, particularly during transition to home and long-term relapse management.Relevance to Clinical Practice: Care for children with nephrotic syndrome should be tailored to disease stage, caregiver capacity, and family resources. Particular attention is needed during the transition home and long-term relapse management, with support for self-management, psychosocial needs, school participation, and maintaining a balance between disease protection and normal childhood.Keywords: nephrotic syndrome, children, caregivers, patient journey mapping, qualitative research, family-centered care