What is known about parental attitudes towards participation in pediatric critical care research? A scoping review
CCCF ePoster library. Duffett M. 11/13/19; 283352; EP103
Mark Duffett
Mark Duffett
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Topic: Systematic Review, Meta-Analysis, or Meta-Synthesis

Tchakerian, Natalie1; Ahmad, Abeer1; Duffett, Mark2
1Faculty of Health Sciences, McMaster University, Hamilton, Canada; 1Department of Pediatrcis, McMaster University, Hamilton, Canada 

Introduction: Prospective informed consent, most often from parents or legal guardians, is the standard and ethically accepted practice in pediatric clinical research. In critically ill children, obtaining timely and fully informed consent is especially difficult.
Objective: To review published studies exploring parental attitudes toward participation in pediatric clinical research.
Methods: This scoping review includes original research of any design including parents of children admitted to an intensive care unit (ICU) or hospitalized with severe or acute illness. We excluded studies focusing on neonates and studies failing to include parental attitudes. We searched MEDLINE and EMBASE (January 2019) and  two reviewers screened and assessed publications independently for eligibility.

Results: We included 19 studies reporting on 2424 parents. Ten (53%) studies asked parents about hypothetical research and sixteen (84%) studies were qualitative in design. The median number of parents in each study was 68, the median percentage of fathers included was 22% and seven (37%) studies included bereaved parents. Included studies focused mostly on parental reasons for consent refusal (68%) and general attitudes towards research participation (63%). Parents were mostly approached in the ICU or emergency room (42%) and more than one year after hospital discharge (21%).
Conclusions:This review demonstrates that parents are more accepting of certain consent processes depending on their child's illness severity. However, most studies failed to obtain parental suggestions on potential improvements of these processes. The limited literature including fathers and bereaved parents, supports the need for developing a more holistic understanding of parental attitudes towards research.

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