Caregiver Experience in Pediatric Dialysis

Title

Caregiver Experience in Pediatric Dialysis

Creator

Wightman A; Zimmerman C T; Neul S; Lepere K; Cedars K; Opel D

Publisher

Pediatrics

Date

2019

Description

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. METHODS: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences. RESULTS: Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome. CONCLUSIONS: Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2019 List

Collection

Citation

Wightman A; Zimmerman C T; Neul S; Lepere K; Cedars K; Opel D, “Caregiver Experience in Pediatric Dialysis,” Pediatric Palliative Care Library, accessed August 5, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16111.

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