What is the research about?
Parents of children who die traumatically or unexpectedly from things like suicide or an overdose suffer from mental and physical health problems and can experience massive disruptions in their family life. Grieving parents struggle to find the support they need to deal the devastating tragedy of their child’s death. For about half of these parents, the first, and sometimes only, interactions they have with the healthcare system when their child dies are with a medical examiner or coroner. But medical examiners and coroners have little to no training in helping grieving families, and there are no standards guiding medical examiners or coroners on how or even if they should help grieving families. This gap leaves parents to find the help they need on their own.
However, different kinds of resources in the community exist to help these grieving parents and families. Many community-based organizations organize support groups, provide counseling, or help parents identify peers who have gone through a similar experience. These community-based organizations have reported that they struggle to make sure parents who need their resources know they exist and are available to help.
There is clearly a need to help parents suffering after their child’s unexpected or traumatic death get to existing resources in the community. This research will test two different strategies for addressing this gap in the healthcare system by helping parents whose children die traumatically or unexpectedly find the community resources they desperately need.
Who can this research help?
This research will help three groups. It will help parents of children under 25 years old who die unexpectedly or tragically by supporting parents to find the resources they need during times of severe grief and turmoil. It will help medical examiners’ and coroners’ offices by testing strategies that could easily be initiated by or even implemented within their office to support families. Finally, it will help community organizations and providers by getting parents to the resources they provide.
What is the research team doing?
The research team will work with five medical examiners’ and coroners’ offices in the Chicagoland area to test two different strategies for helping parents whose children die traumatically or unexpectedly. The strategies are called CommunityRx-Bereavement (CRx-B) and general bereavement support information (GBSI). Both strategies start by having the medical examiner or coroner refer parents to an organization called Missing Pieces. Missing Pieces does not deliver healthcare services to grieving families; rather, Missing Pieces helps families find grief services in their community.
For CRx-B, a Grief Navigator from Missing Pieces will call the parent; share information about grief and support resources; learn what resources the parent needs for themselves and their family; send the parent a personalized list of grief and social support community resources called a HealtheRx via text, email, or mail; and plan future text message communications with bidirectional functionality and, if requested, calls from the Grief Navigator to occur at least 3, 6, and 12 months after the child’s death.
For GBSI, Missing Pieces sends parents a unidirectional text message providing a general list of grief resources (e.g., support groups) and information about grief and bereavement within two weeks of the child’s death and again 3, 6, and 12 months after the child’s death. To learn about which strategy works better, the study team will ask parents to complete surveys 6 and 13 months after their child dies and participate in one-on-one interviews 13 months after their child dies. The survey will measure how confident parents feel about getting grief resources, as well as assess their mental and physical health, sense of hope, and family functioning.
Researchers will also ask medical examiner and coroner staff to complete surveys and participate in a one-on-one interview at the end of the study referral period. Parent interviews, surveys and interviews with medical examiners and coroners, and input from the Grief Navigators will assess what each of those groups thought about and what they felt could be done to improve CRx-B and GBSI. With this information, the study team hopes to learn if CRx-B or GBSI are better at helping parents, while also learning the best approach to introducing these strategies into real-world settings.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.