UBC Graduate Research

Exploring the Pediatric Dialysis Caregiver Experience : a Scoping Review Leung, Tracy


Background: Technological advances in dialysis treatments have paved the way for improved survival in children with End-Stage Renal Disease (ESRD). Despite these improvements, their caregivers may face significant challenges associated with their child’s illness and complex care needs. It is important to increase our understanding of their caregiving experience as they have been reported to have significant caregiver burden, report poor health-related quality of life, and practice maladaptive behaviours. A scoping review was conducted to answer the following question: what are the primary caregivers’ experiences with providing care to children under the age of 18 with ESRD undergoing dialysis treatment? Methods: The scoping review was guided by the Joanna Briggs Institute framework and the Garrard Matrix Method. After searching the CINAHL and PubMed databases, 437 potential articles were identified and 12 articles were selected for review. Findings: Several themes regarding their caregiver experience were uncovered: their family structure and the socioeconomic aspects of their lives, caregivers’ attitudes towards their children, physical and psychological struggles, social losses, and growth in the context of caregiving. Conclusion: The experience of this unique population of caregivers is complex and multifaceted. In the face of the various challenges and hardships they encounter, these caregivers foster growth and strength. The study findings provide direction for the provision of family-centered and evidence-based nursing care. Several knowledge gaps were identified which require further exploration. Further research is needed to understand the experience of this population of caregivers in Canada, how their health-related quality of life is affected, and how caregivers are counselled about dialysis and treatment options.

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