Parental perspectives of dialysis initiation for children with kidney disease: a qualitative study

Abstract

To better support family-centered care surrounding dialysis initiation, greater understanding of caregiver experience is necessary. 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 in caregiver experience of caring for a child initiating dialysis were identified with additional emphasis on the experience of caregivers of color. Thirty-five caregivers participated. Three major themes emerged from qualitative analysis: 1) Parenting disrupted – caregivers experienced an acute disruption in their parenting role due to the unexpected, emergent circumstances and vast information accompanying their child’s diagnosis; 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, communication with the medical team, and engaging in care plan development; 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, watching over their child’s care, and preparing for future changes in their child’s health. If caregivers’ evolution was not nurtured and enabled, acute fluctuations in their child’s care could contribute to future disruption and need to restore their parental role. However, if caregiver development was fostered, caregivers acquired increased ability to prepare for vacillations in their child’s care. Caregivers of color noted added challenges not discussed by white peers in disruption of parenting and redefining of parenting that were associated with additional applications of resilience in their child’s future care. 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, with particular attention to the unique experiences of caregivers of color and respond to the family’s changing experience of kidney disease.