Parents' perceptions of the quality of pediatric and perinatal end-of-life care.

OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey.

SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care.

RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas.

CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families.