Raising Children Who Might Get Type 1 Diabetes

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Maternal efforts to prevent type 1 diabetes in at-risk children, by A.E. Baughcum and colleagues. Diabetes Care 28:916-921, 2005.

What is the problem and what is known about it so far?

Genetics is the study of how characteristics or traits, like eye color or hair color, are passed from parents to their children. Some people have genetic traits that may cause them to get diabetes, and these traits can be identified in newborn babies. Identifying these traits at a very early age may help treat children who eventually get type 1 diabetes.

In Europe and the U.S., there are many studies under way to identify babies who have genetic traits that could lead to type 1 diabetes. However, there only a few studies that have looked at how parents raise children who they know have a genetic trait that may result in type 1 diabetes. There is no recommended way to prevent type 1 diabetes, and genetic traits alone do not mean that a baby will get type 1 diabetes (diet and infection also play roles). Mothers of babies who have genetic traits that might lead to type 1 diabetes may take their own actions to try to prevent the disease in their children. This study wanted to look at the types of actions mothers take to prevent type 1 diabetes in their children.

Why did the researchers do this particular study?

This researchers wanted to look at how new mothers changed their behavior when they were told that their children could get type 1 diabetes. Researchers wanted to know whether mothers would change their child's daily routine and how the mothers dealt with their feelings when they learned that their children might get type 1 diabetes.

Who was studied?

A total of 192 mothers took part in the study. They were chosen to take part because their babies had a genetic trait that may cause type 1 diabetes. Fifteen of the mothers had type 1 diabetes, and most of the mothers were well educated, white, and married.

How was the study done?

Newborn babies were tested for a genetic trait that may cause diabetes. If they had the trait, their mothers were contacted by phone and asked if they wanted to take part in the study. The mothers who took part in the study were again contacted by phone 4 weeks, 4 months, and 12 months later to discuss whether they did anything to try to prevent their children from getting type 1 diabetes. They were also asked about how they felt about knowing that their children could get the disease.

What did the researchers find?

Researchers found that most mothers tried some way to prevent diabetes in their children. Mothers who had a close family member with diabetes were 19 times more likely to try some form of prevention. Some mothers in the study tried to prevent type 1 diabetes in their children by changing their diet, helping them to get more exercise, getting their blood glucose tested, and lowering stress. Many of the mothers tried to deal with the possibility that their children might get diabetes by finding information about the disease, talking to other women, wishing that their child would not get the disease, and praying.

What are the limitations of the study?

Most of the mothers who took part in the study were well educated and had high incomes. Because these mothers probably have better access to resources and information, they may be more likely to try to prevent diabetes in their children.

In this study, it was hard to compare the actions taken by all of the mothers. For instance, some mothers reported giving their children fewer sweets, but it is not clear whether these children actually ate fewer sweets than the children of mothers who said they did not give their children fewer sweets.

Also, mothers of children who had close relatives with type 1 diabetes were more likely to take actions to try to prevent type 1 diabetes. These mothers may have still taken actions even if they did not know that their children had a genetic trait that could lead to type 1 diabetes.

What are the implications for the study?

This study helps researchers understand how parents respond to knowing that their babies have a genetic trait that might lead to type 1 diabetes. Knowing how parents try to prevent type 1 diabetes in their children can help researchers understand the results of future studies that look for ways to prevent the disease.

FOR MORE INFORMATION

The Genetics of Diabetes

Type 1 Diabetes

ADA Complete Guide to Diabetes, 3rd ed. (Alexandria, Va., ADA, 2002).

Maternal anxiety associated with newborn genetic screening for type 1 diabetes, by S. Bennett Johnson and colleagues. Diabetes Care 27:392-397, 2004.