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Published on: May 31, 2024
Caregiver Experience in Pediatric Dialysis
Aaron Wightman1,2,3, Cortney Taylor Zimmerman4, Shari Neul5
1Divisions of Nephrology, aaron.wightman@seattlechildrens.org.
Insights
Caring for a child on dialysis presents a spectrum of challenges and rewards for parents. Understanding these caregiver experiences is crucial for developing effective support systems and improving quality of life for families managing end-stage kidney disease.
Area of Science:
- Pediatric Nephrology
- Caregiver Support
- Chronic Illness Management
Background:
- Pediatric dialysis imposes dual parental and medical management roles on caregivers.
- Caregivers of children with end-stage kidney disease face significant burdens.
Purpose of the Study:
- To describe the experiences of parental caregivers for children undergoing chronic dialysis.
- To identify both positive and negative aspects of the caregiver role.
Main Methods:
- Semistructured interviews were conducted with 35 primary caregivers of children on chronic dialysis.
- Thematic analysis was used to identify key themes and subthemes in caregiver experiences.
Main Results:
- Four major themes emerged: caregiver medicalization, emotional adjustment, pragmatic adaptation, and social adjustment.
- Experiences ranged from positive to severely burdensome, encompassing various life domains.
- Identified subthemes included diagnosis, disease management, psychological burden, financial impact, and social relationships.
Conclusions:
- Caregivers of pediatric dialysis patients report diverse positive and burdensome experiences.
- Findings highlight the need for advocacy and targeted interventions to support these families.
- Improving caregiver experience is essential for pediatric end-stage kidney disease management.
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.
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