National SIDS & Infant Death Program Support
Center
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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 Centers
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 teams 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 Centers 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 Centers 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 programs
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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The SIDS & Infant Death
PSC web site is partially funded by the
Health Resources and Services
Administration (HRSA), Maternal
and Child Bureau (MCHB),
a branch of the U.S. Department
of Health and Human Services (HHS).
This web site is hosted by the SIDS
Network, Inc.
and operated by CAM
Consulting.
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