HELPING OUR BABIES

SIR profiles a public agency considered a pioneer in the investigation of "at risk" babies. Their research helped discover and thus respond to the crack/cocaine epidemic.

Background

The New York City Department of Health (NYC DOH) administers an innovative program which identifies "at risk" infants and tracks them for the first five years of life. The Infant health Assessment Program (IHAP) collects data about the medical, educational and psychological services used by these vulnerable children, and makes service referrals as necessary.

The program requires a database capable of both longitudinal case follow-ups as well as cross- sectional data analysis. That's how SIR database management system fits the program nicely since SIR's strengths are in data analysis, data integrity and ease of managing high volumes of complex data.

We spoke with Lorraine Chun, Director of IHAP; Dr Doris Goldberg, Medical Director of IHAP; and Lisa Elkind, the program's Computer Associate, late last year to learn more about their program. We are most grateful for their time.

The Task

IHAP identifies newborns at 14 hospitals (11 municipal and 3 voluntary hospitals) who are deemed at risk for developmental delays or dysfunction. The state- set criteria for deciding which infants are at risk include: very low birth weight, pre-maturity, major congenital anomalies, very young mothers and babies who have required neo-natal intensive care for more than ten days. New York city added maternal substance or alcohol abuse as an additional criterion.

The data collection process begins with a NYC DOH public Health Adviser initiating contact with new mothers at the participating hospitals. The adviser gathers information from hospital records and then determines which babies fit the registration criteria. The worker then interviews the mother, explaining the program and the registration procedure, and seeks her consent to have her baby followed by the program.

IHAP identifies almost 5000 infants per year. Developmental follow-up forms number between 850 and 1200 per year. The team reports to the state on a quarterly basis, providing information on cumulative registration, follow-up status and closed cases. The state also requires registration criteria (that is, the factors that caused the baby to be registered in the first place).

Results are Satisfying The epidemic of babies born to mothers who used crack/cocaine was first documented by IHAP. Information coming out of such identification and follow-up will help educators and other professionals learn about the special needs of these children since no on knows best how to plan for their needs.

SIR is proud to play a role in this vital program. As a result of our site visits to New York late last year, we organised the first local area SIR course in New York in January. Lisa Elkind attended the full five day course and Dr Goldberg and Ms Chun attended the two day introductory portion of the course.

SIR is EASY

Lorraine Chun told us, "Even though we're not very computer literate and the course went a bit fast for us, both Dr Goldberg and I feel that we understand SIR a lot better now. Also, SIR/EASY is very helpful. I actually tried it and it wasn't too bad".

"Prior to taking the course," Lisa Elkind said, "I was self taught from the SIR manuals. I found working with PQL difficult, though I managed with the help of the people on the SIR hotline. Now that I've taken the course, my speed in turning out retrievals and reports has improved. I'm at least twice as productive as I was before. That's partly because the course let me see the whole picture. It let me see what facilities and procedures are available. I still have to look them up in the manual, but now I know what to look for.

I really like SIR/EASY. It gives me a good basis to work from. It writes the initial PQL program for me and then I can customise it further. Also, several people around the office have found that SIR/EASY really opens up the database to them," Elkind said.

Continuing Progress

While technology can control many of the stickier points of complex research, one factor that cannot be controlled directly is the participant factor. Longitudinal follow-up depends upon looking at program participants over time. Attrition remains a real threat to longitudinal follow-up programs such as the IHAP. Accordingly, the research team plans to extend the database and link up with other data collection efforts, notably with the Human Resources Administration (HRA).

The HRA is a department of New York City with a very large computerised data system. The HRA documents clients on public assistance and Medicaid, as well as children in foster care and protective services. This sort of linkage would maximise follow-up by providing additional information about the current residence and receipt of services of the program participants.

Tracking is important for another reason. It promotes periodic screening for growth and development so that children can receive special services as needed.

If you are interested in learning more about the IHAP program, please send your request to :

Lorraine Chun, Director
IHAP/NYC Dept. of Health
Box 37, 125 Worth Street
New York, New York 10013
USA


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