Grief Support Following Pediatric Death in Chicagoland: A Focus on Support Groups and Medical Examiner Deaths in the Chicagoland Area

Background: The leading cause of death in children ages 1 – 24 years old is unintentional injuries. For children and adolescents ages 10 – 24 years old, the second and third leading causes of death are suicide and homicide, respectively. To mitigate the biological, psychological, social, and spiritual hardship on parents, siblings, extended family, and peers after a pediatric death, many utilize support groups or other bereavement resources. Loss is particularly challenging after violent and unexpected deaths, which disproportionately impact people of color. The medical examiner (ME) is often a key contact point for parents after an unexpected death. In this study, we describe the range of grief support options for people after pediatric death in the Chicagoland area and characteristics of support groups. We also identify geographic gaps between location of support groups and socioeconomic characteristics by zip code, as well as gaps between location of support groups and deaths evaluated by the ME.

Methods: We surveyed organizations that provide bereavement support following pediatric death about their service characteristics and locations. We emailed surveys to members of Missing Pieces, a coalition of Chicagoland people and organizations working to enhance support for people impacted by perinatal through young adult deaths. We used a “snowball” process to obtain survey responses from organizations not involved in Missing Pieces. Additional data about ME death cases was obtained from the Cook County ME office, the county with the largest numbers of ME/coroner cases in the Chicagoland area.

Results: We identified 75 unique locations that provide grief supports after pediatric death in the Chicagoland area. The most commonly offered services were support groups (60/75, 80%), grief and education training for healthcare professionals (50/75, 66.7%), and individual and/or family counseling (44/75, 58.7%). Among organizations that offer support groups, 63% (38/60) support people after death by suicide. 45% - 50% of the organizations with support groups serve people after death by other causes (table 1). Most organizations with support groups were used by parents (57/60, 95%), siblings (53/60, 88%), and extended families (44/60, 73%). Only 23% (14/60) of support groups had comprehensive services for Spanish speakers. Geomapping shows qualitatively that support group locations do not correspond to areas of higher population density, lower median income, and larger black populations. Also, support group locations do not correspond to locations with the largest number of ME cases (figure 1).

Conclusion: A wide range of grief support options are available throughout Chicagoland, with support groups being the most common. Geomapping shows important gaps in support group locations for areas with more dense populations, lower median income, black communities, and communities with higher numbers of ME death cases. Further work is needed to improve access to bereavement support following pediatric death in targeted communities.