Whom Do You Tell?

16 10 2006

When your child is chronically infected with hepatitis B or C, whom do you tell?  If it’s need-to-know only, then who needs to know?

This question is a biggie for parents.  Once the information is shared, you can’t take it back, so it’s worth devoting some thought to the answer.

One parent said her own mother no longer allowed the child with hepatitis to visit for fear she would infect the other grandchildren. Another parent reported one of her family members felt “morally obligated” to tell her neighbors of her child’s diagnosis.

A parent in Virginia reported telling her minister about her daughter’s newly-diagnosed hepatitis infection only to have the minister request that the child not attend Sunday school.

When parents first hear that their child has viral hepatitis, their initial reaction is to talk about it in-depth and often in order to process, examine and explore the traumatic news. Ironically, it is when parents need to talk the most about a viral hepatitis diagnosis that they should talk the least to those outside the doctor’s office and immediate family.

The problem with disclosing is we don’t know how the person receiving the news will react. 

Parents need to evaluate the true health risk that their child poses to others when assessing whether to share this information and when. In schools, daycare centers and camps, most staff should have been instructed on standard precautions.

Coaches and community volunteers should also have some working knowledge of standard precautions. And parents of infected children should teach their children from a young age simple hygiene practices like handwashing, managing their own cuts so as not to expose others to their blood, and not touching the blood or body fluids of others.

There are some assumptions of “safety” that parents can make when deciding whom to tell, yet there are a variety of gray areas. Other parents, other kids and youth organization leaders, such as those involved in scouts or sports leagues, may not be well-versed in standard precautions. So whom should parents tell, if anyone?

Medical Professionals

Most parents agree that because doctors, nurses, dentists and other healthcare workers are legally obligated to safeguard a patient’s medical information, a child’s medical condition can be safely shared with this group. Also, it may be important to the overall treatment of the child for the attending healthcare staff to know of the chronic infection when making medical decisions concerning the child.

Schools and Daycare Centers

According to Dr. Harold Margolis, former director of the Hepatitis Division at the Centers for Disease Control and Prevention (CDC), disclosure may not be necessary if a school or institution is already practicing standard precautions.

 “Students infected with HIV, HBV or HCV do not need to be identified to school
personnel, based on the assumption that school staff are using standard precautions when handling first-aid or emergency situations,” Dr. Margolis added. “Since HIV-, HBV- and HCV-infected children and adolescents will not be identified, policies and procedures to manage potential exposures to blood or blood-containing materials should be established and implemented, and parents should take an active role to ensure these are in place.”

Babysitters and Camps

Camps, like schools and daycare centers, should follow standard precautions and their staff should be appropriately trained. Parents need to be advocates in ensuring all
children who attend the camp are protected by proper precautions.

Babysitters, who come into the home, may not be so well-versed in standard
precautions.

According to Dr. Margolis, “It is good practice generally for all of us to use precautions when dealing with blood and body fluids containing blood. You could make it a practice that all of your babysitters use latex gloves when handling any body fluid, followed by good hand washing. You could present this practice as a preventative measure to protect the health of both your children and the babysitter. The babysitter’s course developed by the American Red Cross has specific training on this issue. They recommend that latex gloves be made available within the household and that sitters use the gloves when handling blood or body fluids.”

Youth and Sports Events

Many parents admit that to share information about their children’s disease with the soccer coaches or Girl Scout leaders is tantamount to sharing it with the entire
community.

If the child is participating in a sport like football or soccer, it is important to make sure the coaches, volunteers and participants all practice standard precautions.

No parent wants another child to become infected with hepatitis viruses, and no one wants to be sued by a coach, teacher or parent who claims they would have taken extra care to practice standard precautions if only they had known a child was infected with hepatitis B or C.  Nor do parents want to expose their own children to the discriminatory acts that informing invariably invites.

Play Dates and Sleepovers

The age of the child and the type of relationship the infected child’s parents have with other parents play a role in deciding how to handle play dates and sleepovers.

Obviously, if parents are good friends and have disclosed the child’s hepatitis status and the other parents will follow standard precautions, this is the best route.

Because play dates and sleepovers are not usually organized, “official” events, it is unreasonable to expect that the chaperones will know about standard precautions and will not only use them but will ensure that the children use them.

Extended Family Members and Friends

Parents report reactions from extended family members they’ve told range from “shunning” to warm support. As mentioned earlier, parents need to think carefully about who needs to be told and why.

Conclusion

Those parents who share their young child’s diagnosis with others often find how the information is shared is almost as important as with whom one shares it. Experts suggest a five-point plan:

• Determine who needs to be told.

• Identify their level of understanding about the hepatitis.

• Try to predict their likely response to the information and prepare yourself mentally for it.

• Tell them about the diagnosis (which includes asking them not to say anything about the hepatitis to the child or to anyone else).

• Prepare an education packet so that they can prepare themselves to deal with the reality of a child who has hepatitis.

A balance must be found, when determining whom to tell and not tell, that protects the rights of the individual and the health of us all. Every parent struggles with this issue every day.  For more complete information on this topic go to

http://www.pkids.org/pdf/phr/10-01whomtotell.pdf
 


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