Children and HIV
Children with HIV can both be healthy and feel well with a well-functioning treatment. There is no reason to treat a child with HIV any differently than siblings or other children, no need to be worried when they are playing and hanging out with friends.
Preschool and school
Childcare is a right for all children. Each municipality is responsible for offering all children the appropriate childcare pending on their needs. There are no restrictions when it comes to offering children with blood infections a place at a preschool or school. Your child has all the rights to live as normally as possible and should always be treated like any other child, except in the few cases that are medically justified.
Who should know?
Information regarding a child’s HIV infection must never be given to childcare and school personnel without the guardian’s consent. If your child is of preschool age, it is a common recommendation that two persons on the staff, preferably those who have the closest contact with the child, as well as the preschool director are informed. Although it is the preschool manager’s responsibility to ensure that the staff has the right knowledge, it might be good to ensure that yourself. The nurse at the child’s clinic/reception can help provide information or you can contact Noaks Ark.
Before school starts, there is really no reason to inform anyone other than the school health service, i.e. the school doctor and the school nurse. When there is a change of school class or other school changes, the current school nurse, in consultation with the parents and with the help of staff from the hospital, gives information to the new attending school nurse.
The business manager (for example, a principal or superintendent) is responsible for ensuring that the staff has sufficient knowledge and that it is regularly updated. Since infection from an unknown carrier is always the greatest risk, it is necessary that current hygiene rules are well known and followed by all staff, regardless of whether you know whether you have a child with HIV at the preschool/school or not.
Care for children with HIV
Your child and you should receive the same preventive health care as other families, that is, medical follow-up, developmental assessment, parenting groups, and other health-promoting activities. The nurse of the HIV team informs the BVC nurse and the BVC doctor and provides information regarding vaccinations.
Children with HIV should ideally be treated at a children’s clinic in collaboration with the infection clinic. Even if your child has HIV, he or she is still a child and needs to be treated by someone who knows and understands children’s psychosocial and physical development. It is also important that your child has his or her own doctor, even if there are more of you in the family living with HIV.
To help and make it easier to talk about HIV with children, Noaks Ark Stockholm has produced a series of support material. The material speaks to children, young people, and adults in the form of books, films, and a web application that connects conversations and facts about HIV in an everyday and imaginative way.
It is not easy to know when your child is old enough to be told he or she has HIV. You as the parent decide when this should happen. One way could be to tell the child when it is small (preschool age) that there is something, a virus in the blood, that can be dangerous for others. It may be a good opportunity to talk about it during hospital visits, perhaps you can receive some help from the staff to talk about it with your child.
When children are 8-10 years old, they are usually mature enough to know everything about their HIV infection. It is important that the school nurse knows how much your child has been informed so that she can give your child the right support at school.
As your child gets older, new questions may arise. Maybe he or she wants to get their ears pierced or starts to become sexually active. When your child is of a mature age, around 10-16 years, he or she needs to be well informed about ways of transmission. Your child needs to be given the opportunity to talk about HIV both during hospital visits and on other occasions.
The HIV team at Karolinska University Hospital arranges an “HIV school” for children living with HIV. It takes place over an extended weekend and is offered to all children with HIV in Sweden. Here your child will gain knowledge about sex and relations and about the Infection Prevention Act. All information is adapted to your child’s age.
The HIV team at Karolinska University Hospital also arranges one weekend conference per year for young adults with HIV between the ages of 17 and 26. The program is extensive and it’s an opportunity for young people to discuss their life situation with other young people living with HIV.
The Infection Protection Act
When your child is of a young age, you as the guardian are responsible for ensuring that the infection prevention regulations are followed. When your child gets older, it is up to you to make sure that he or she understands what the infection prevention regulations mean.
It is only you as the guardian who decides when you want to tell about your child’s HIV status unless the Infection Protection Act requires it. Doctors and other healthcare personnel are not allowed to tell, that is a breach of the duty of confidentiality.
Children of parents and other family members who are living with HIV
Children who do not have HIV themselves but who have parents or other family members with HIV may feel that something is not right, even if the family member has not informed them about their HIV status. Most children appreciate when parents are honest with them. At the same time, many parents find it difficult to tell their children that they have HIV.
If you feel that your family relationships are becoming complicated due to HIV, it might help to talk to someone outside your family. You are most welcome to contact us at Noaks Ark. We have extensive experience in supporting families living with HIV.