SIDS National Resources for Title V Programs

SIDS National Resources for Title V Programs

The Maternal and Child Health Bureau supports states in their efforts to reduce deaths due to SIDS and to support families who have suffered a sudden unexpected infant death of any sort. With Special Projects of Regional and National Significance (SPRANS) funding, the Bureau has funded four resource centers that offer information and technical assistance to professionals and the public: the National SIDS Resource Center ; the National SUID/CD and PL Project; the National Program Support Center (PSC); and Project Impact. Highlights of each Center are described below. 

The National Sudden and Unexpected Infant/Child Death & Pregnancy Loss Resource Center at Georgetown University provides critical resources on safe sleep, SIDS and other sleep related deaths, bereavement support materials, and related topics such as stillbirth and miscarriage. Resources include: 

·   A comprehensive A to Z list, linking users with credible resources for professionals and families

·   Weekly Journal Alerts, summarizing the latest research studies from PubMed and other major databases

·   Bibliographies on current topics ranging from bed sharing and bereavement to smoking and stillbirth

·   Print and electronic Publications such as Helping Baby Back to Sleep

·   A Training Toolkit covering training on risk reduction and health promotion, culturally competent services, first responders, and additional resources to support training programs

·   A Multimedia Gateway to address the growing demand for audio and video resources related to sudden and unexpected infant/child death and pregnancy loss  

The Resource Center also offers personalized information services through a toll-free telephone line and e-mail box. It works closely and collaboratively with the Maternal and Child Health Library, providing resources such as: 

·   The MCH Alert: Focus on Infant Mortality that provides detailed summaries of the latest research, findings, policy developments, recently released publications, new programs, and initiatives of interest to busy professionals.

·   The Infant Mortality and Pregnancy Loss Knowledge Path, which includes links to websites, electronic publications, databases, and discussion groups. 

The National Sudden and Unexpected Infant/Child Death & Pregnancy Loss Project (SUID/CD and PL) at the National Center for Cultural Competence (NCCC) is designed to support state and local Title V and public health programs, family support and advocacy organizations, and national organizations that address SUID/CD and PL to increase their capacity to incorporate cultural and linguistic competence into their services and supports, materials and training efforts and community engagement. The project offers a number of resources including:  

1) A video and related training materials: Infusing Cultural Competence into Health Promotion Training;  

2) A resource guide: A Guide to Choosing and Adapting Culturally and Linguistically Competent Health Promotion Materials 

3) A Policy Brief: Infusing Cultural and Linguistic Competence into the Multiple Systems Encountered by Families Following the Sudden, Unexpected Death of an Infant; and 

4) A checklist: Promoting Cultural Diversity and Cultural Competency in SIDS Programs: Self-Assessment Checklist 

The NCCC has also identified a series of promising practices in risk reduction and bereavement support available on their website. Finally, there is a Spanish language section of the NCCC website that provides direct links to Spanish language information for families on SUID/CD and PL. 

NCCC faculty is currently collaborating with NFIMR to develop a cultural and linguistic competence self-assessment tool for FIMR programs. The NCCC website also offers a wealth of other resources and products on cultural and linguistic competence. In addition, Title V MCH programs can contact the NCCC with questions and for suggestions for resources at (800) 788-2066 or cultural@georgetown.edu . 

The National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Program Support Center (PSC) is a program of First Candle and provides resources for state and local health departments, community organizations and health care providers for training and education on SIDS/sudden unexpected infant death (SUID) and stillbirth. The PSC provides, free of charge:

·         Educational materials on SIDS risk reduction and infant safe sleep practices to parents, caregivers and health departments

·         Training curricula and limited train-the-trainer-style training for nurses, child care providers, pharmacists and other professionals on SIDS risk reduction and infant safe sleep practices as well as bereavement support training for professionals who support families who experience SUID, stillbirth or neonatal death

·         Technical assistance to programs or organizations that want to replicate or implement new SIDS/SUID and stillbirth awareness or bereavement initiatives that target underserved communities

·         In conjunction with the Resource Center, support for the comprehensive SIDS and Infant Death Program Manual and Training Guide for health care professionals

For more information, contact the PSC at (800) 221-7437 or info@firstcandle.org 

The National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project IMPACT (PI) serves as the communications hub for a national network of fetal, infant and child mortality professionals. Project IMPACT convenes, connects and communicates with SIDS and SUID professionals in the public and private sector. PI is the host of the Sudden Unexpected Infant Death-Infant Mortality (SUID-IM) listserv, believed to be the largest national listserv uniquely addressing SIDS and SUID, including sleep related infant deaths. 

In its communication role, PI connects directly with state and local programs and is their conduit to federal agencies. The scope of work includes convening federal, state and local programs and reporting recommendations on legislation, policies, programs and practices. Over the past year, PI has conducted regional meetings around the nation and engaged MCH directors, epidemiologists, medical examiners, state and local SIDS/SUID professionals to learn more about the current status of SIDS and SUID, including infant safe sleep initiatives, risk reduction education materials, public and private partners and bereavement support.  

PI also provides:

·         National webinars on SIDS/SUID related topics

·         Technical support and quarterly communication to state and local programs

·         Promising practices highlighting state and local efforts related to SIDS/SUID

·         National SIDS/SUID contact list 

Project IMPACT is a program of the Association of SIDS and Infant Mortality Programs, a national network of SIDS, SUID and Infant Mortality professionals.  

The following contributed to this article:

Suzanne Bronheim
Director, National SUID/Child Death and Pregnancy Loss Center, National Center for Cultural Competence
Georgetown University Center for Child & Human Development 

Sandra J. Frank, JD, CAE
Executive Director
Association of SIDS & Infant Mortality Programs/Project IMPACT 

Marian Sokol
President
First Candle/National SUID & Child Death and Pregnancy Loss Program Support Center