Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit

Erin Paquette, Avani Shukla, Jacob Davidson, Karen Rychlik, Matthew Davis

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)2-12
Number of pages11
JournalEthics & human research
Volume41
Issue number3
DOIs
StatePublished - May 1 2019

Fingerprint

Pediatric Intensive Care Units
Research
Parents
Altruism
Critical Care
Hispanic Americans
Emotions
Cross-Sectional Studies
Pediatrics
Surveys and Questionnaires

Keywords

  • human subjects research
  • parental consent
  • pediatric research participants
  • research benefits
  • research burdens

Cite this

@article{e2cbfc19d0ed4e5f9c917cd7f304c5f3,
title = "Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit",
abstract = "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.",
keywords = "human subjects research, parental consent, pediatric research participants, research benefits, research burdens",
author = "Erin Paquette and Avani Shukla and Jacob Davidson and Karen Rychlik and Matthew Davis",
year = "2019",
month = "5",
day = "1",
doi = "10.1002/eahr.500014",
language = "English (US)",
volume = "41",
pages = "2--12",
journal = "Ethics & human research",
issn = "2578-2363",
number = "3",

}

Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit. / Paquette, Erin; Shukla, Avani; Davidson, Jacob; Rychlik, Karen; Davis, Matthew.

In: Ethics & human research, Vol. 41, No. 3, 01.05.2019, p. 2-12.

Research output: Contribution to journalArticle

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

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

VL - 41

SP - 2

EP - 12

JO - Ethics & human research

JF - Ethics & human research

SN - 2578-2363

IS - 3

ER -