Caregiver Experience in Pediatric Dialysis

Abstract

BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.

Association of Food Insecurity and Acute Health Care Utilization in Children With End-stage Kidney Disease

“…2 Dialysis places significant burden on families, but little is known about food insecurity in this population. 3 Methods | We performed a retrospective cohort study of pediatric patients with end-stage kidney disease (ESKD) undergoing chronic peritoneal dialysis or hemodialysis at Seattle Children's Hospital from January 1 to July 1, 2018. This study was approved by the institutional review board at Seattle Children's Hospital, and all families provided written consent.…”

Calidad de vida del paciente con epilepsia y sobrecarga de su cuidador

“…Relación entre la calidad de vida, el control de la epilepsia y la sobrecarga de los cuidadores tener sobrecarga o sobrecarga leve, esto relacionado quizá a la CVRS. Sin embargo, la amplia variación de resultados (desde nula hasta severa sobrecarga) coincide con cuidadores de niños con otras patologías crónicas [28][29][30][31][32][33][34] . Desafortunadamente no existen estudios semejantes de sobrecarga del cuidador del niño con epilepsia.…”

“…Nuestra cifra de sobrecarga en cuidadores abuelos (21%) concuerda con estudios donde los cuidadores reportan mayor sobrecarga a mayor edad, probablemente por disminución de la capacidad física y aumento de la prevalencia de enfermedades crónico-degenerativas 28,29,33 . Además, factores como gravedad de la patología, ansiedad y estrés también afectan la sobrecarga 28,29,[34][35][36][37][38][39][40] . La mayoría de nuestra muestra mostró sobrecarga nula o leve, y buena calidad de vida del paciente.…”

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

“…43 Parents of children with CKD have higher rates of depression and anxiety, poorer HRQoL and increased financial strain; and though these burdens evolve, they do not resolve with transplantation. [44][45][46][47][48][49][50] The challenges experienced by children with CKD and their families require intentional, thoughtful shared decision-making incorporating patient, parent, and clinician. Patients and parents value information sharing with nephrologists and desire to serve as experts in their lived experience, but both parties report feelings of censorship in interactions at times.…”