Safety in Pediatric Hospice and Palliative Care: A Qualitative Study

Abstract

Introduction: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified definition of safe care. This qualitative study sought to explore caregiver views regarding safe care in pediatric HPC. Methods: This is a secondary analysis of qualitative data from a multisite study utilizing semistructured interview data to evaluate parental perspectives of quality in pediatric home-based HPC programs across 3 different pediatric tertiary care hospitals. Eligible participants included parents and caregivers of children who were enrolled in a pediatric home-based hospice and palliative care program (HBHPC) from 2012 to 2016. The analysis was done using grounded theory methodology. Results: Forty-three parents participated in 39 interviews across all 3 sites; 19 families were bereaved. Responses to the prompt regarding safe care produced 8 unique domains encompassing parental definitions of safe care in pediatric HPC. Discussion: Parents of children in HPC programs describe "safe care" in novel ways, some of which echo Maslow's hierarchy of needs. The use of traditional hospital safety measures for patients receiving HPC could undermine the patient's goals or dignity, ultimately leading to harm to the patient. Concluding summary: Patients' and families' unique goals and values must be considered when defining safety for children in this population. Future studies should continue to explore family perspectives of safety in the hospital and ambulatory settings and seek to identify measurable indicators in safety which are truly patient- and family-centered.