Primary caregivers' perceptions, needs, and expectations regarding nutritional management of children with chronic kidney disease: a qualitative study.

BACKGROUND

Nutritional management plays a critical role in optimizing growth, delaying disease progression, and improving long-term outcomes in children with chronic kidney disease. However, caregivers' perceptions, experiences, and support needs regarding nutritional management remain insufficiently understood.

METHODS

A qualitative descriptive study was conducted using semi-structured face-to-face interviews between May and July 2025 in a tertiary women's and children's hospital in Chengdu, China. Fifteen primary caregivers of children with CKD were recruited through purposive sampling. Data were analyzed using conventional content analysis with the assistance of NVivo 11.0 software. Data collection continued until thematic saturation was achieved.

RESULTS

Four major themes and related subthemes emerged: (1) mismatch between caregivers' information needs and the current information environment; (2) variability in caregivers' willingness and ability to engage in nutritional learning; (3) barriers to translating intention into home-based nutritional management; and (4) caregivers' needs and expectations regarding nutritional management. Caregivers commonly reported limited access to reliable and authoritative nutritional information, difficulties in appraising information quality, and insufficient continuity of healthcare support. Learning engagement varied according to educational level, caregiving burden, and perceived practicality of information, while culturally influenced preferences (e.g., traditional Chinese medicine) also shaped participation in formal education. Despite generally strong motivation, caregivers frequently experienced an intention-behavior gap, struggling to translate knowledge into consistent dietary practices.

CONCLUSION

Caregivers of children with CKD face substantial challenges in accessing, understanding, and applying nutritional information in daily care. These difficulties appear to be influenced by limitations in informational support, differences in motivation, and practical caregiving capacity. The findings highlight the importance of providing caregivers with clear, practical, and accessible nutritional support that better facilitates long-term home-based nutritional management for children with CKD.