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Care and Treatment for Children Living With HIV

December 3, 2015

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The Challenge of Adherence for Children Living With HIV

Medicines cannot work if they are not taken correctly. If children do not take their HIV drugs exactly as directed, HIV can mutate, or change. Some of these changes enable HIV to survive and reproduce (make copies of itself) despite having the HIV drugs in the bloodstream. When this happens, we say that HIV has developed resistance to the HIV drugs and the child will likely have to change to another treatment (for more information, see our article about resistance).

The best way to avoid resistance is to take medicine just as it is prescribed. This is called "adherence" and means taking the right amount of medicine at the right time and in the right way (with food, or on an empty stomach), without missing or stopping. Children need to be adherent to their HIV drugs' dosing schedules for the treatment to work well.

When talking with your child's health care provider about which HIV drugs your child will take, think about your day and how you will fit taking HIV drugs into your child's schedule. If you are also living with HIV, you may want to think about how your child's dosing can fit with your own. It may be helpful for both of you to take your HIV drugs together, as a type of family activity; however, your child may take different HIV drugs that need to be taken on a different schedule.

Getting children to take medicine can be a real challenge. Children may not like how medications taste or they may have trouble swallowing pills. Many children do not understand why they should put up with drugs' side effects. Older children may hide pills or pretend to take them.

It may be especially difficult for kids to take their medicines in front of others. Taking pills in public or in a social situation may cause embarrassment or emotional distress. Going on vacation, trips, or to camp may make it more difficult for children to stick to their medicine schedule. It is important to talk about these situations with your child living with HIV and plan ahead for problem times.

Both you and your child may need extra help with your child's adherence. Ask your pediatrician or other parents for suggestions about how to help your child take medication. Try using reminders, rewards, timers, color-coded messages, and weekly dosing packets to check adherence. If your child is having trouble taking a particular HIV drug, talk to your health care provider. It is possible that the HIV drug can be switched to a different one or that your child can be put on a different schedule.

Children Living With HIV and Disclosure Issues

Many parents are concerned about who they should tell about their child's HIV status. It is your right to decide this for yourself. Your child living with HIV is not a danger to others. HIV can not be spread through casual contact or saliva, tears, or sweat. Your child can not infect someone by hugging, going to school, or sharing toys, utensils, food, and drinks. It can be very helpful for children living with HIV to understand this so they can interact at school and with other children without concern.

It is important for parents to help their children take responsibility for protecting themselves and protecting each other. HIV can be transmitted through blood and certain bodily fluids (semen, vaginal fluids, and breast milk). Since there is a small chance that infected blood on a toothbrush or razor could infect someone else, it is best not to share these items. You can teach your child what to do if they cut themselves and how to dispose of their used bandages and other items.

Those who need to know about your child's status are the people involved in their care, such as nurses, pediatricians, dentists, and social workers. It may be helpful to get support from your health care providers or local AIDS service organization as you decide whom to tell. While it is for you to decide when is the best time to tell your child about his or her HIV (see our article, "Talking with Your Children about Your HIV Status or Your Children's Status"), it is very important to tell your child before she or he becomes sexually active.

Taking Care of Yourself

Any childhood illness can be hard for parents as well as for their kids. As a parent, you might find yourself wishing that you could take the sickness away from your child. You may feel upset because the medication that you need to give your child causes him or her distress. You may feel helpless when there is not a good way to explain the situation to your child. Remember that these are normal experiences and feelings for any parent.

It is as important to take care of yourself as it is to take care of your child living with HIV. Here are some tips:

  • Find information and resources at a local AIDS service organization (click here to search the POZ directory in the US; go to AIDSmaps' e-atlas to find global resources)
  • If you feel alone, find other parents who can understand and provide support. If there are no other parents nearby who have children living with HIV, find a group for parents of children with other on-going health care needs or look for an internet group.
  • If you are living with HIV, take care of your own emotional and physical health. Many parents put their children's health first. You need to stay healthy to help your child.
  • If you have other children, find special time for them too
  • While you want your child to be healthy and safe, it is important to allow him or her to enjoy normal childhood experiences
  • Remember that it is okay to ask for help from family and friends. While being a parent is a full time job, sometimes being a good parent means taking a break!
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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.

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