Paper Presentation: Parent/Caregiver Experience — It Can Be Hard But It's Not Bad': Documenting Caregiver Perceptions of Benefits/Burdens to Participating in Pediatric Palliative Care Research (204-1)

3:30 – 4:30 pm Thursday, October 28

Documenting the benefits and burdens of pediatric palliative care research on children and their families could yield new knowledge relevant to study methods and allay uneasiness among clinicians and institutional review board members about pediatric palliative care research.

Pediatric palliative care depends on research to continue advancing care effectiveness for seriously ill children and their families. Methodology to sensitively assess the benefits and burdens of child and family study participation could yield information to address the concerns of reviewers, regulatory bodies, and clinicians and guide future research. Currently, no established methodology exists to solicit benefits or burdens from participants in pediatric palliative care research, though such a methodology could become a best-practice standard. Participation impact could yield new and useful information beyond other study findings. Our purpose is to report participation benefits and burdens from caregivers of seriously ill children after their participation in a pediatric palliative care study.

Speaker(s):
Cheryl Reggio, BN-PC RN CPON®
CNE Hours:
1