Aaron Wightman1,2,3, Cortney Taylor Zimmerman4, Shari Neul5, Katherine Lepere3, KristiLynn Cedars6, Douglas Opel2,3. 1. Divisions of Nephrology, aaron.wightman@seattlechildrens.org. 2. Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, Washington. 3. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington. 4. Section of Psychology, Nephrology Service, Department of Pediatrics, Texas Children's Hospital, Houston, Texas. 5. Division of Hematology and Oncology, Department of Pediatrics, Vanderbilt University, Nashville, Tennessee; and. 6. Division of Psychology, Department of Psychiatry and Behavioral Medicine, Children's Hospital of Wisconsin, Milwaukee, Wisconsin.
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. 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.
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.
Authors: Daniella Levy Erez; Melissa R Meyers; Swathi Raman; Melissa Thomas; Susan Furth; Christopher B Forrest; Michelle Denburg Journal: Front Pediatr Date: 2022-05-23 Impact factor: 3.569
Authors: David G Thoele; Cemile Gunalp; Danielle Baran; Jamie Harris; Douglas Moss; Ramona Donovan; Yi Li; Marjorie A Getz Journal: Perm J Date: 2019-11-22