TY - JOUR
T1 - Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit
AU - Paquette, Erin
AU - Shukla, Avani
AU - Davidson, Jacob
AU - Rychlik, Karen
AU - Davis, Matthew
N1 - Publisher Copyright:
© 2019 by The Hastings Center. All rights reserved
PY - 2019/5/1
Y1 - 2019/5/1
N2 - Despite an ongoing need for pediatric research, low study enrollment may impede study completion, particularly in critical care. We conducted a prospective cross-sectional survey and chart review study to assess parent experiences with research in a pediatric intensive care unit (PICU). Of the 80 parents who completed the study survey, 54% were approached to participate in a research study in the PICU, and 93% agreed to participate. Motivators included altruism, low burden, low risk, and research that would benefit the child. Barriers included risks to the child, the child's being too sick to participate, feeling overwhelmed, not having enough time to participate, the research's being burdensome, and the research's not being explained well. PICU parents had mostly favorable attitudes toward research participation. Compared with non-Hispanic survey respondents, respondents of Hispanic ethnicity less often reported having been approached for research, which further evidences the need to track research recruitment processes to help avoid underinclusion of members of minority populations.
AB - Despite an ongoing need for pediatric research, low study enrollment may impede study completion, particularly in critical care. We conducted a prospective cross-sectional survey and chart review study to assess parent experiences with research in a pediatric intensive care unit (PICU). Of the 80 parents who completed the study survey, 54% were approached to participate in a research study in the PICU, and 93% agreed to participate. Motivators included altruism, low burden, low risk, and research that would benefit the child. Barriers included risks to the child, the child's being too sick to participate, feeling overwhelmed, not having enough time to participate, the research's being burdensome, and the research's not being explained well. PICU parents had mostly favorable attitudes toward research participation. Compared with non-Hispanic survey respondents, respondents of Hispanic ethnicity less often reported having been approached for research, which further evidences the need to track research recruitment processes to help avoid underinclusion of members of minority populations.
KW - human subjects research
KW - parental consent
KW - pediatric research participants
KW - research benefits
KW - research burdens
UR - http://www.scopus.com/inward/record.url?scp=85074622718&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85074622718&partnerID=8YFLogxK
U2 - 10.1002/eahr.500014
DO - 10.1002/eahr.500014
M3 - Article
C2 - 31108571
AN - SCOPUS:85074622718
SN - 2578-2363
VL - 41
SP - 2
EP - 12
JO - Ethics and Human Research
JF - Ethics and Human Research
IS - 3
ER -