SIDS Program Manual SIDS & Infant Death Program Manual and Trainer's Guide Trainer's Guide

Program Expansion

Bereavement Expansion Considerations

The Institute of Medicine notes that an important factor in bereavement is the difference between sudden unexpected deaths and those that are expected. Sudden, unanticipated deaths in children are the norm. Forty-three percent of deaths from ages 1 to 4 are due to unintentional causes: brief, unanticipated illnesses and homicide. The majority of deaths are due to acute process or trauma-related.15

Bereavement issues to consider before expanding include:

  • Not all deaths will have autopsies and the referral sources for support will broaden to include hospitals and other health care professionals. Programs must market their available support services to area health departments, hospitals and emergency rooms. A referral form and system would need to be developed. There would be a need for presentations to potential referral sources regarding the organization’s expansion of services to SUI/CD.
  • New clinical skills may be necessary for service providers. Staff will need knowledge of major causes of sudden infant/child death, such as leukemia and meningitis, and increased knowledge of overall infant/child mortality and statistics. Staff will also need increased medical training on hospital care and family experiences. The medical issues and concerns regarding subsequent children will vary.
  • Service providers must have an increased knowledge of grief issues that pertain to deaths from accidents and sudden illnesses. Support group facilitators will need training to be aware of the special features and problems inherent in varying causes of death and what impact they may have on bereaved families. For example, some discussion during support groups will not be applicable to all attendees. A facilitator must possess the clinical skills to discern the contrasted needs of an entire group, such as a baby who did not suffer versus a baby who did, preventable death versus unpreventable death and known cause of death versus unknown cause of death.
  • Existing peer contact systems have to be modified to meet the needs of not only families receiving a SIDS diagnosis but also accidental suffocations, undetermined cause of death, stillbirths, etc. Existing peer contact systems can expand their expertise as new peer contact volunteers are recruited, which may increase the capability of matching families based on the type of loss they experienced.

Programs should not duplicate or compete with already-existing services within their communities. Organizations need to work collaboratively and to partner with other agencies and effectively utilize existing resources. Already-established bereavement organizations include the Compassionate Friends, March of Dimes and RTS Bereavement Services.