|Parents’ Perceptions of the Quality of Pediatric and Perinatal End-of-Life Care
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
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.
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.