46 - Caregiver perspectives of dialysis initiation for children with kidney disease: a qualitative study
Sunday, April 24, 2022
3:30 PM – 6:00 PM US MT
Poster Number: 46 Publication Number: 46.340
Taylor R. House, University of Washington and Seattle Children's Hospital, SEATTLE, WA, United States; Abby R. Rosenberg, University of Washington School of Medicine, Seattle Children’s Research Institute, Seattle, WA, United States; Cortney Taylor Zimmerman, Baylor College of Medicine, Houston, TX, United States; Krysta S. Barton, Seattle Children's, Seattle, WA, United States; Aaron Wightman, University of Washington School of Medicine, Seattle, WA, United States
Fellow Physician University of Washington and Seattle Children's Hospital SEATTLE, Washington, United States
Background: To better support family-centered care during the distressing time of dialysis initiation, greater understanding of caregiver experience is necessary.
Objective: A parent qualitative study of caregivers of children requiring dialysis was performed examining caregiver experience. In the present secondary analysis, we sought to investigate caregiver experience at the crucial time of dialysis initiation and to explore opportunities to better support family-centered care delivery.
Design/Methods: Using thematic analysis, we conducted a secondary analysis of semi-structured interview data from a qualitative study of caregivers of children receiving dialysis recruited from 3 pediatric centers. Prominent themes and subthemes in caregiver experience of caring for a child initiating dialysis were identified, and a thematic schema of representative processes was developed.
Results: Thirty-five caregivers (89% female, 60% white, 92% English-speakers) participated. Three major themes emerged from qualitative analysis: 1) Parenting disrupted – caregivers experienced an acute disruption in their parenting role due to the unexpected nature of their child’s illness (sudden shock), the vast information accompanying their child’s diagnosis (information deficit and overload), and emergent circumstances (death versus dialysis); 2) Redefining parenting– caregivers sought to reestablish their innate parental role and foster their evolving medical provider role through reassurance that their child could survive (permission to hope), communication with the medical team (quality of communication), and engaging in care plan development (illusion of choice); and 3) Leveraging dual identities – to positively impact their child’s experience and enable flourishing, caregivers leveraged their established caregiver role and newly realized medical provider role through voicing their perspectives (empowerment), watching over their child’s care (vigilance), and preparing for future changes in their child’s health (managing the unexpected). If caregivers’ evolution was not nurtured and enabled, acute fluctuations in their child’s care could contribute to future parenting disruption and need to again restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child’s care.Conclusion(s): Improving the delivery of family-centered care and support of caregivers at dialysis initiation will require directed efforts by nephrology care teams to foster caregiver evolution and resilience and respond to the family’s changing experience of kidney disease.