Addressing Caregiver Burden Among Caregivers of Pediatric Renal Disease Patients
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Authors
Eze, Sochi
Issue Date
2023-08-07
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Nursing
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Abstract
Purpose: The purpose of this project was to assess caregiver burden and subsequently determine strategies to improve caregiver burden for parents who are responsible for caring for a child who is either post kidney transplant or is receiving peritoneal dialysis or hemodialysis for kidney failure. Background: Caregivers of children on dialysis or post renal transplant have reported financial difficulties, social isolation, poor physical health, depression, disruption of family activities and relationships, and lower health related quality of life. Caregiver burden may negatively influence health outcomes of their children. Sample/Setting: Primary caregivers of a child with kidney failure post-transplant or receiving peritoneal or hemodialysis from at central Texas outpatient dialysis clinic. Method: Caregiver burden was determined by using the Pediatric Renal Caregiver Burden Scale (children receiving dialysis) and the Zarit Caregiver Burden Scale (children post-transplant). Semi-structured interviews were conducted during focus groups to determine themes regarding their existing burden as well as determine strategies to help lessen this burden. Result: 50% (6/12) of participants completed the caregiver burden scale (n=6 Caregiver Burden Scale). 8% (1/12) completed the Pediatric Renal Caregiver Burden Scale (n=1 Pediatric Renal Caregiver Burden Scale). The Caregiver Burden scale was high in all 5 domains (relationships, emotional well-being, social and family life, finances, and loss of control over one's life) for caregivers of children post renal transplant. The caregiver of a child on hemodialysis completed the Pediatric Renal Caregiver Burden Scale and scores indicated high burden as well. Identifying themes included emotional burden, coping strategies, lack of support, change in relationship, knowledge concerns and financial concerns. Conclusion: Caregivers of both pediatric patients on dialysis and pediatric post renal transplant patient reported high levels of burden which affects their process of caregiving. Healthcare personnel can help establish a more supportive atmosphere for caregivers thereby improving the overall quality of care for pediatric patients on dialysis and pediatric patients’ post-renal transplant.
Keywords: caregiver burden, pediatric chronic kidney disease, Caregiver-reported outcomes
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Copyright is retained by the Author. A non-exclusive distribution right is granted to Creighton University