Factors Affecting Recruitment and Participation of Bereaved Parents in Research: A Brief Report

Abstract

Context: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies.

Objectives: Examine which child demographic characteristics are associated with parental participation in survey-based research.

Methods: Post-hoc secondary analysis of the Survey of Caring for Children with Complex Chronic Conditions. Demographic data were extracted from children's medical records for all eligible parents. Using logistic regression, associations were calculated between child demographics and level of parental study participation (enrolled and completed survey (full participation), enrolled but did not complete survey (incomplete participation), and declined participation).

Results: Two hundred nine children's parents were eligible for analysis, 114 (55%) fully participated, 36 (17%) incompletely participated, and 59 (28%) declined participation. Compared to those who fully participated, parents of non-white children were more likely to incompletely participate (OR 3.01, 95% CI 1.2-7.4), while those with public insurance only were more likely to decline participation (OR 2.1, 95% CI 1.08-4.03). Parents of children who had a documented limitation to resuscitation order were more likely to fully participate in the study (reference group) than incompletely participate (OR 0.42, 95% CI 0.2-0.91), while parents of children who had subspecialty palliative care involvement were less likely to decline participation in the study (OR 0.5, 95% CI 0.26-0.97).

Conclusions: To ensure optimal end-of-life care for children, all parental voices should be heard. Recruitment of racial/ethnic minorities in bereaved parent survey-based studies can be improved by focusing on specific factors that are associated with parental survey completion.

Keywords: Bereaved parent survey; Complex chronic conditions; Parental bereavement; Pediatric end-of-life research; Research diversity.