A recent study conducted at the Medical University of Vienna analyzed the experiences of children with end-stage kidney disease (ESKD) and their families, shedding light on the impact of the disease on their lives. The study included 19 children with ESKD who underwent kidney transplantation, as well as 34 family members, including caregivers and siblings. The researchers used an open-ended qualitative approach, conducting interviews to capture the narrative and biographical life stories of the participants.
The findings of the study revealed that achieving normality in daily life was the most important outcome for all family members. Each group had different perceptions of what normality meant, with survivors aiming for regular development, caregivers striving for normality for the entire family, and siblings playing a key role in supporting the relationship between patients and caregivers. The study also highlighted the need for coping strategies and support from extended family members and healthcare professionals.
The researchers emphasized the importance of understanding the bio-psycho-social perspectives of children with ESKD and their families in order to personalize interventions and improve quality of life. They recommended providing timely information, education, and counseling to prepare all family members for the challenges of kidney transplantation. The findings also suggested the need for targeted interventions to address unresolved challenges and support siblings in their role of promoting life participation for children with ESKD.