Patients' and Parents' Perspectives on Palliative Care Integration in Pediatric Nephrology

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Background: Integrating palliative care (PC) can ease the burdens of pediatric CKD and help children and families flourish, but it remains underutilized. A key barrier is nephrologists’ concerns about family perceptions of PC. We sought to describe child and parental perspectives on incorporating PC into pediatric nephrology. Methods: We conducted a paper-based, cross-sectional survey of children ages 10-18 with CKD stages 3-5 and their parents at a single center. The survey was adapted from a validated tool with input from an advisory board and pretested through cognitive interviews. Queries evaluated PC needs, experiences, and attitudes toward integration. All items were optional. Data were summarized descriptively. Chi square tests were used to assess differences between child/parent responses. Results: Twenty dyadsparticipated (48% response). Only 1 child (5%) had heard of PC versus 65% of parents; none familiar with PC held negative views. After receiving a definition of PC, nearly all children (89%) and parents (85%) saw PC as a good addition to care (Figure 1). Children were significantly more likely than their parents to support PC involvement at CKD diagnosis (82% vs 33%; P<0.001) (Figure 2). Few felt including PC would diminish hope (Figure 1); one child (6%) and 3 parents (15%) said the PC team’s role in end-of-life care made them less willing to meet the team. More expressed concern about PC disrupting existing nephrology care. Conclusion: While many parents of children with CKD are familiar with PC, children have limited familiarity. Both support PC integration, with children more likely to prefer involvement at diagnosis. Given concerns about disrupting nephrology care, embedding PC clinicians in kidney teams may best meet families’ needs.

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