Research
Pediatric palliative care research has concentrated on the EOL care of children with malignant disease with little focus on the multitude of needs that precede EOL. Children with BT have distinct needs, yet they are rarely studied as a separate group. Instead, children with BT
are grouped with other childhood malignancies in EOL studies making it difficult to elucidate
their unique symptom management burden and palliative care needs.
Current palliative care research is limited by nonrandomized studies, surveys and focus groups of bereaved parents, and retrospective chart analyses. In studies focusing on EOL
care, ethics review boards remain conservative in judging harm. Thus, ethics review boards remain reluctant to support prospective studies using dying children and/or their parents despite evidence that neither children nor their parents are negatively impacted or traumatized by the research process