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

Bereavement Support Services

Community-Based Bereavement Services

Information and Referrals

A common barrier to providing referrals to families is confidentiality. Although all deaths are a matter of public record, public agencies may try to protect newly-bereaved families by sharing limited information on families. For information on the impact of the Health Insurance Portability and Accountability Act (HIPAA) see The FIMR Process and HIPAA and http://www.hhs.gov/ocr/hipaa. Program staff need to develop partnerships and relationships with those responding professionals and agencies that have this information to identify newly-bereaved families.

Typical contacts may include:

  • Coroners, their investigators, pathologists and secretarial staff
  • Hospital personnel
  • Community physicians
  • First responders and prehospital professionals (police, EMTs/paramedics, fire personnel)
  • Funeral directors and aftercare bereavement coordinators
  • Clergy
  • Community mental health professionals
  • Healthy Start programs
  • Bereavement organizations
  • Hospital genetics program personnel
  • Fertility program personnel

These local professionals can be contacted with a letter of introduction or brochures that describe your program’s supportive services. These letters should be followed up with a personal meeting or telephone call to ask for their assistance in referring newly-bereaved families to your organization.

While notification within the 24- to 48-hour period following a sudden and unexpected infant death is ideal, often it may take longer before notification is made. Due to changes in the diagnostic process, families may not know the infant’s final cause of death for several weeks or months, and program staff should be prepared to offer services and support while the family waits for the diagnosis.

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