Children living with end stage renal disease: A qualitative study from the perspectives of the children, mothers, and HCPs

Aim

To understand the illness/ caring experience of Jordanian children with End-Stage Renal Disease (ESRD), from the perspectives of the children, their mothers, and the healthcare professionals (HCPs.) involved in their care.

Method

A descriptive qualitative study using individual, semi-structured interviews conducted with four children living with ESRD, eight mothers caring for a child with the condition, and four physicians and five nurses involved in the children's care. The interviews were conducted in several pediatric units in two hospitals in Amman, Jordan. The SRQR guidelines for reporting this qualitative study were followed.

Findings

The interview data were organized and contextualized into three major themes reflecting the most significant experiences of the participants: (1) challenges faced by children, including the suffering caused by dialysis, dietary restrictions, extended hospital admissions, and distruptions in education; (2) challenges faced by mothers, including financial challenges, the effect on other siblings, and feeling restricted; (3) challenges faced by HCPs, including the reactions on the initial diagnosis, and parental blame and conflict with healthcare Professionals.

Conclusion

Children with ESRD, their mothers, and the HCPs involved experience severe challenges. A primary responsibility of HCPs is to steadfastly advocate for children with ESRD and their families and to devise strategies for implementing tailored interventions that help these families cope with their distressing and complex circumstances.