How to Tell Children They Have Hepatitis C
November 6, 2017
Experts who have studied children with cancer and HIV/AIDS recommend parents tell their child about a hepatitis C infection as soon as she or he can understand the information, starting at age 8 or earlier if the child is asking detailed medical questions.
Early disclosure is critical to how the child and family cope and live with hepatitis C. How that disclosure occurs, and the building process that leads to that moment, hinges on the child's age, maturity, family situation and medical condition.
Two important rules for parents and caregivers to consider are:
When the time to disclose arrives, it is never easy. Parents fear children will question them about past drug use or other behaviors if that played a role in the infection. Parents who are themselves infected with hepatitis C fear disclosing their own disease to their children. But by the time children reach ages 6 to 10, it is useless to shield children from the knowledge that their parents are struggling with a serious illness.
Adoptive and foster parents must be prepared to answer tough questions about the role birthparents, orphanages and re-used medical equipment may have played in their infection.
If an uninformed older child or teen is not asking about his or her visits to the doctor, don't assume the child is not interested. It is important to impart this information even if the child appears uninterested. Children will soon realize their medical histories differ from those of their friends. A child may begin to study diseases in school and realize that the precautions parents take to prevent infection are not practiced by others.
Timing is also important. Parents need to find a time and place to tell a child about the diagnosis that is comfortable for them. If parents are nervous or tense the child will pick up on the body language and start to panic. And, telling children about their hepatitis infection when there is a medical crisis is tricky because the child may be upset that the parent withheld information.
Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health (NIH), says trust between parent and child is paramount during disclosure. Disclosure should occur little by little, beginning when the child can communicate.
Ideally, Wiener explained, when a parent discloses the conversation should begin, "Do you remember when I told you that you had a germ in your blood? That's why we have blood work done every year. Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called hepatitis C."
"The disclosure dialogue is a constant building process," Wiener said. "If the child asks why the parent didn't tell them earlier, the parent needs to be able to say, 'I never lied to you, I told you what was wrong, I just hadn't told you name of the virus."
It may take a child weeks, months or years to absorb the diagnosis. Try to be where the child is at when he or she asks questions. Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for.
"You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before," Wiener added. "Most children I've worked with felt they had been told at the right age and by the right person except those whose parents had a doctor tell them."
At the National Institutes of Health (NIH), counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Generally, parents should be prepared to answer the following questions, depending on the child's age and development. (Some questions apply only if the parent is infected also.)
Here are some general guidelines parents can consider as they prepare for the disclosure discussion.
Give the child a journal or diary or a way to express his/her feelings about the infection. Encourage the child to use art or writing to express feelings. "If hepatitis C had a face, what would it look like? Or start a discussion with, 'If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?' Keep those discussions going," Wiener suggested.
"It is usually not until days or weeks after disclosure that the child has the courage to ask more questions," she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.
Don't forget siblings in the disclosure process. Whether or not a sibling is told depends on age, said Wiener. If the sibling is close in age, he or she should be told, but it should be the infected child's decision to tell a sibling, or let the parent tell. Living with secrets in the home does not promote a healthy emotional climate. Try to minimize the amount of secrets or lying that's going on. However, if there's a medical procedure or if they're on hepatitis C treatment, which may make them ill, it's important that siblings know why.
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[Note from TheBody.com: This article was originally published by HCV Advocate in Oct. 2017. We have cross-posted it with their permission.]
This article was provided by HCV Advocate. Visit HCV Advocate's website to find out more about their activities and publications.
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