A new study has provided insights into the experiences of families with long-term survivors of pediatric end-stage kidney disease (ESKD). The study, conducted by researchers at the Medical University of Vienna, analyzed the bio-psycho-social perspective of 19 children with ESKD as well as 34 family members, including caregivers and siblings. The findings revealed that the desire for normality in daily life was the most considerable overlap among the participants. This desire for normality overshadowed other aspects and differed in interpretation between the survivors, caregivers, and siblings. The study highlights the importance of developing targeted interventions to support these families and promote life participation for children with ESKD.
The study also identified coping strategies and unresolved challenges faced by the families. Siblings were found to play a crucial role in supporting the social integration and normalizing the parent-child relationship for children with ESKD. However, caregivers often struggled to find coping strategies and required focused assistance. The findings suggest the need for timely information, education, and counseling for all family members, including siblings and distant relatives. The study concludes that further research is needed to identify typologies and develop targeted interventions for children with ESKD and their families.
This study contributes to the growing understanding of the experiences and needs of families with long-term survivors of pediatric ESKD. By gaining insights into the desires, challenges, and coping strategies of these families, healthcare professionals can provide more personalized interventions and support. The findings have implications for the development of holistic care approaches that prioritize both medical outcomes and quality of life for children with ESKD and their families.
