National SIDS & Infant Death Program Support Center

 

 

Priority Areas

June 1999

Dear Friend:

In developing networks and projects for SIDS and infant death programs, we work with diverse groups of people -- professionals and volunteers, doctors, administrators, computer technicians, public health officials, community advocates, statisticians, elected officials, etc. We work with people of every race, from a multitude of ethnic and religious backgrounds. A recent conversation with one of our work team members reminded us that, other than their deep commitment to infant survival, there is one constant among all of our constituents. "We are all stretched so thin in our efforts," she said, "Yet, somehow, we manage to keep them going."

We know that there are needs in your state or community that you are struggling to meet. We know that there are programs and services you want to provide, but do not have the resources to develop. The NSIDPSC was created to help you access models for new programs and establish resources that can assist with implementation. We also review training curricula, data resources, and educational brochures from throughout the country to help you identify those most appropriate for your specific needs or audiences.

You may remember receiving a letter last Fall about the opening of the Program Support Center. Perhaps you have called us or met our staff or volunteers at a conference. We want to bring you up-to-date on our activities– and remind you that we invite your participation and/or requests for assistance:

Background:

The work of the NSIDPSC is carried out by eight work teams, each of which specializes in one of the priority areas identified in the strategic work plan. Oversight of the Center’s projects is provided by an Advisory Committee comprised of experts representing a variety of disciplines.

The Advisory Committee met in October 1998 to review the work plan and the development of work teams. Work teams have been meeting bi-monthly since last Winter. The NSIDPSC held a work teams’ meeting in Atlanta, Georgia in April 1999. At this meeting, team members (1) reviewed and made revisions to the work plan, (2) identified their team’s data needs, and (3) collected information which will assist in defining the scope of the Center in relation to infant deaths other than SIDS.

Current Work Team Activities:

Training and Education has determined risk reduction and bereavement support training for community outreach workers to be a priority. They will develop model training components which can be inserted into the existing curricula used by groups such as Healthy Start, state/municipal health departments, Healthy Mothers/Healthy Babies, etc. The team has also identified other categories of professionals and para-professionals who should be trained about SIDS/ID issues. They will review existing training curricula and make exemplary curricula available through the Center’s web site and mailings.

Infant Mortality/Risk Reduction is developing materials specific to the situation and needs of child care providers. They also plan to review child care policies, regulations, and training throughout the country to identify where risk reduction strategies are needed. Another, simultaneous priority is outreach to grandparents. They are creating materials which target grandparents and are making contact with grandparent support groups.

Underserved Populations has developed a model program for organizing an infant mortality "town hall" meeting focused on serving minorities, teen parents, and other underserved populations. The first meeting, held April 29 in Toledo, Ohio, was coordinated in conjunction with the Northwest Ohio SIDS Support Network. Members of this team simultaneously serve on other work teams in order to assure a coordinated approach to the development of culturally appropriate materials and programs.

Data and Evaluation discussed the need, feasibility, and scope of conducting a nationwide survey of SIDS/ID programs as a data collection tool. The team also identifies and analyzes data resources, and disseminates pertinent information in a format that can be used by work teams and SIDS/ID programs.

Bereavement is evaluating professional standards for handling incidents of infant death. Following a review of standards, those that are exemplary will be disseminated. Model standards will be developed for, professions/ institutions which currently have inadequate or no bereavement support standards. The team will review bereavement support materials and disseminate those that are exemplary. They are also creating an evaluation form to measure families’ satisfaction with the support services that they receive.

Policy and Administration has reviewed and update the strategic work plan and the composition of the Advisory Committee and work teams. This team will facilitate an Advisory Committee process of composing a position statement on the Center’s scope of work relevant to infant deaths other than SIDS. The team is also reviewing existing and pending state legislation involving SIDS scene investigation, diagnosis, and support services. They will examine how state and federal health care programs (managed care, CHIP, welfare reforms, etc.) effect the incidence of infant death and the provision of risk reduction and bereavement services.

Information, Communications and Technology has developed a web site which features links to other infant mortality organizations, a nationwide calendar of events, and employment opportunities. The team also identifies and facilitates options for the dissemination of data and materials to SIDS/ID programs.

Diagnosis will review existing and model legislation for mandatory autopsy in cases of sudden infant death to assure that it is up-to-date and feasible. They will also promote the usage of CDC and Department of Justice protocols for death scene investigation and will foster linkages between CFR and FIMR and local SIDS/ID organizations.

You can expect to hear more from us within the next few months. NSIDPSC staff and volunteers will be contacting you to discuss your program’s needs. We will also be distributing a request for curricula and materials for our reviews. We hope that you will be able to take a little time to help us on both of these projects. If in the meantime you have any questions about – or want to participate in --our activities, we welcome your call.

Sincerely,

Kathleen Graham
Program Coordinator

Ann H. Adams
Assistant Coordinator

Last Updated: June 06, 2004

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