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.

Pediatric biorepository participation during the COVID-19 pandemic: predictors of enrollment and biospecimen donation

“…Furthermore, few existing studies on pediatric biorepositories enroll patients from a general pediatric population and rather focus on pediatric patients impacted by rare diseases such as congenital heart disease and cancer [ 13 , 16 , 18 , 19 ]; enrollment rates in such biorepositories range from 55-97% [ 14 , 18 – 21 ]. To our knowledge, this is the first study of demographic and epidemiologic predictors of enrollment in a pediatric biorepository examining characteristics of pediatric patients themselves (rather than their parents/guardians) or conducted in a pandemic setting [ 14 , 15 , 22 ].…”

“…Parents are generally willing to enroll children in clinical trials [ 24 – 26 ]. Parents agree to their children's participation of there is a higher perceived benefit to their children [ 15 , 23 ]. Parents tend to overestimate the benefits of research on the well-being of their children and underestimate any risks in donating samples [ 26 , 27 ].…”

“…We hypothesized that school-age children would be least likely to provide nasopharyngeal swabs and blood. Parents are less willing to enroll their children when they are concerned about the physical pain or discomfort that their children may face, if their children are more seriously ill, or if they are concerned about their children’s privacy and confidentiality [ 13 , 15 , 16 ]. We found no differences by age or other factors regarding participants’ willingness to donate biospecimens, which suggests that efforts in this population should be most focused on enrollment itself rather than consenting for specific biospecimen provision.…”

Paediatric biobanking for health: The ethical, legal, and societal landscape

“…A practical example emerged from a study carried out at a US pediatric intensive care unit, where it is routine practice for administration to approach parents on admission, with a consent form for enrolling the child in the pediatric biobank. However, out of 80 parents that later agreed to take part in a study, only 54% confirmed that they had already been approached in relation to research ( 104 ).…”

Improving Advance Care Planning for Seriously Ill Children: Engaging a Diverse Research Population Early and Often

“…In one study examining enrollment of seriously ill children in research in the pediatric intensive care unit, only 74% of parents reported they felt respected during a research approach and 63% believed that they had adequate time to decide about participation, suggesting both of these as targets for research teams to consider when attempting to enroll patients into research studies. 9 In addition, for stakeholder driven studies such as this, study teams may bring to bear principles of community engaged research to research conducted within the institution. Respecting that distinct ethical issues may arise with engaging children and parents in community-based research approaches, strategies that embody stakeholder involvement at all stages of the research process will ideally incorporate the viewpoints of diverse groups.…”