Editorial: Parent, Grandparent, and Sibling Responses to the Death of an Infant or Child in Intensive Care

The death of a child is a devastating event for most parents and other family members1. However, responses to a child’s death vary by culture, generation, and often the age of the deceased child. For the Chinese, child death is a “bad death” and brings shame to the family2. Filipino parents of a deceased child feel severe guilt after their loss3. In some Caribbean cultures young mothers are prevented from attending the child’s funeral or going to the cemetery by women in the previous generation in the belief that if you “take one to the cemetery you will be taking all of your other children there as well.” In other cultures, those who die as children have not sinned, securing their place in heaven4. In the ethnically-diverse US, more than 43,000 children aged 18 and younger die each year5, most in intensive care units6. Friends, relatives, co-workers, and healthcare providers (HCP) often are uncomfortable with the parents after their child’s death, not knowing what to do, what to say, and what would help the deceased’s parents and family members. Many assume that parents and family members want to be left alone after the infant’s or child’s death. As a result, parents, siblings, and grandparents report feeling isolated and abandoned by those close to them when they need them most7–10. Little research has been done with these US family members in the difficult first year after the child’s death. What has been done has shown that studies of parents have been conducted years, even 3–7 decades11, after their infant’s or child’s death. However, many studies have very diverse samples regarding the age of the “child” at death. In some studies, family members are responding to the death of a “child” who died in childhood (≤18 years old) and a “child” who died as an adult (19 and above), sometimes as old as 40, in the same study12. In addition, studies of siblings whose brother or sister died during the sibling’s childhood are often retrospective. Some studies postpone data collection until the sibling reaches adulthood; and some studies recruit bereaved siblings when they are adults. Very few studies have been undertaken with grandparents of the deceased child. With funding from the US NIH National Institute of Nursing Research and the National Institute of General Medical Sciences, a body of research has been conducted on parents’, grandparents’ and siblings’ health and functioning during the first year after the infant’s or child’s death in the neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU) to fill our knowledge gap