The Spectrum of Patient and Caregiver Experiences

Creator(s)

Allison Tong
Ansara H. Piebenga
Bradley A. Warady, Children's Mercy HospitalFollow

Document Type

Book Chapter

Publication Date

3-2021

Identifier

DOI: 10.1007/978-3-030-66861-7_50

Abstract

Children and adolescents on dialysis have severely impaired quality of life and poor psychosocial outcomes. Dialysis is highly burdensome, painful, and invasive, and children are also required to manage multiple medications and adhere to dietary and lifestyle restrictions. This chapter describes the spectrum of the lived experience of children on dialysis and their caregivers based on evidence from qualitative studies and includes real-life accounts from parents reflecting on their journey of caring for their child on dialysis. Insights into patient and caregiver experiences can inform strategies to improve care and outcomes in children and adolescents requiring dialysis.

Journal Title

Pediatric Dialysis

First Page

957

Last Page

973

Recommended Citation

Tong, A., Piebenga, A.H., Warady, B.A. (2021). The Spectrum of Patient and Caregiver Experiences. In: Warady, B.A., Alexander, S.R., Schaefer, F. (eds) Pediatric Dialysis. Springer, Cham. https://doi.org/10.1007/978-3-030-66861-7_50