HIV in the family

With proper treatment, children with HIV can live a life in good health and well-being. There is no reason to treat a child with HIV differently from siblings or other children who do not have HIV. This also applies to playing and socializing with friends.

Pregnancy and HIV

The risk of HIV transmission during pregnancy or childbirth is very low if the mother is well-treated in the early stages. A person with well-treated HIV is also entitled to fertility evaluation and assisted reproduction according to the same principles as a person without HIV. Breastfeeding is not recommended, but may be allowed under specific conditions. Prophylactic treatment for newborns of well-treated mothers with HIV should be given for two weeks, according to the 2024 guidelines.

Pre-school and school

All children have the right to childcare. Each municipality has the responsibility to provide all children with appropriate childcare according to their needs. A child with a blood infection can still be offered a place in a nursery or school, as there are no restrictions preventing this. The goal is for your child to live as normal as possible. This means treating the child like any other child at all times, except in the few cases that are medically justified.

Who should know?

Information in childcare and school staff about a child’s HIV infection should never be given without the parent’s consent. If your child is of pre-school age, it is a common recommendation that two staff members, who are in close contact with the child, and the head of the pre-school are informed. It is the preschool director’s responsibility to ensure that the staff have the right knowledge, but you may want to ask this question yourself. The nurse at the child’s clinic can help provide information or why not contact Noak’s Ark, if we are available locally?

Before the start of school, there is really no reason to inform anyone other than the school health service, i.e. the school doctor and school nurse. In the event of a transition or other change of school, the transferring school nurse, in consultation with the parents and with the help of staff from the hospital, will inform the school nurse at the new school.

The head of the school (e.g. principal or head teacher) is responsible for ensuring that thestaff have sufficient knowledge and that it is regularly updated. As transmission from an unknown carrier is always the greatest risk, it is essential that current hygiene rules are well known and followed by all staff, whether or not they know they have a child with HIV in the nursery/school.

Care for children with HIV

You and your child shall receive the same preventive health care as any other family, i.e. medical follow-up, developmental assessment, parenting groups, and other health promotion activities. The nurse in the HIV team informs the Children’s Healthcare Centre (BVC) nurse and doctor and provides information regarding vaccinations.

Children with HIV should ideally be treated at a pediatric clinic in collaboration with the infectious disease clinic. Even if your child has HIV, he/she is still a child and needs to be treated by someone who knows and understands the psychosocial and physical development of children. It is also important that your child has his or her own doctor, even if there are other people in the family living with HIV.

To tell

Noak’s Ark Stockholm has developed support material that makes it easier to talk about HIV with children. The material is for children, young people and adults in the form of books, films and a web app that connects conversations and facts about HIV in an everyday and imaginative way.

It can be difficult to know when your child is ready to be told that they have HIV. It is up to you as a parent to decide when this should happen. One way is to tell your child when they are young (pre-school age) that there is something, a virus in their blood, that can be dangerous to others. This can be a good time to talk about it during hospital visits, perhaps with the help of staff.

By the time children are 8-10 years old, they are usually ready to know all about their HIV infection. It is important that the school nurse knows how much your child has been told so that they can support your child at school.

As your child gets older, new questions may arise. They may want to get their ears pierced or become sexually active. As your child matures, between the ages of 10 and 16, he or she will need to know more about transmission routes. The child needs to be given the opportunity to talk about HIV both at hospital visits and at other times.

The HIV team at Karolinska University Hospital organizes 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. The children learn about sex and cohabitation and about the Infection Control Act, adapted to their age.
The HIV team at Karolinska University Hospital also organizes one weekend conference per year for young adults with HIV aged 17 to 26. The educational program is extensive and young people have the opportunity to discuss their life situation with other young people living with HIV.

Infection Control Act

When your child is young, it is your responsibility as a parent or guardian to ensure that the infection control rules are followed. When your child grows up, it is your responsibility to make sure they understand what the infection control rules mean.

Only you, as the parent or guardian, can decide when to tell (unless required by the Infection Control Act) about your child’s HIV status. Doctors and other healthcare professionals are not allowed to tell you, as this would be a breach of confidentiality.

Children of parents living with HIV and other family members

Children who do not have HIV themselves, but who have parents or other family members with HIV, may sense that something is not right even if the family member has not told them about their HIV status. Most children appreciate it when their parents are honest with them and have no secrets. At the same time, many parents find it difficult to tell their children that they have HIV.

If you feel that your relationships within the family are suffering as a result of HIV, you may find it helpful to talk to someone outside the family. You are always welcome to contact Noaks Ark. We have extensive experience in supporting families living with HIV.

Children and HIV

Today, 130 children live with HIV in Sweden and in addition, there are many children in families where one or both parents are living with HIV. Regardless of who is living with HIV, the whole family is affected.
Noaks Ark Stockholm has produced a series of support materials to help and make it easier to talk about HIV with children. The material is for 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. You can familiarize yourself with the material below. You can also order the material in physical form to have at home.

You can listen to the Noaks Ark’s podcast where Vendela Hagås, pediatric nurse and family therapist, talks about the various challenges faced by families living with HIV. She also talks about the unique material that has been produced to make it easier to talk to children and young people about HIV.

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