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

Bereavement Support Services

Bereavement

Today, the deaths of children account for less than 5 percent (approximately 55,000) of all deaths in the United States. While sudden deaths have become less common, for those parents, families, communities and health professionals who experience these deaths, the experience is devastating, and the impact is far-reaching.

Historically, families and professionals observed that because of the nature of SIDS, the impact on families and communities was intense and long-lasting.1 SIDS deaths were seen as being unique because:

  • The child’s death was sudden. The family had no reason to expect that the child was ill or would die.
  • The cause of the child’s death is unknown, which left the family with more questions than answers.
  • The criminal justice system was often involved, and families often faced suspicion and accusations of child abuse.

The variety of bereavement support services that have been developed to address these unique needs include information and referrals, counseling and case management, peer support services, ongoing communication and public awareness. While bereavement support has improved greatly since the 1960s, much more remains to be done.

In 2003, the Institute of Medicine (IOM) published When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, which detailed the state of services to families experiencing the death of a child from any cause. IOM found that bereaved families often failed to receive competent, compassionate and considerate care for their physical, emotional and spiritual needs. However, the report notes that better bereavement support is possible.

State and local SUID/SIDS program staff play a critical role in improving and maintaining services to families, professionals and the community. In order to improve bereavement services, it is important for staff to understand the grief and bereavement process, the unique aspects of a sudden unexplained death such as SIDS, the role of community bereavement providers, the role of training and education and existing bereavement resources.

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