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Parent/Pediatrician Communication
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Unfortunately, many children are diagnosed when they
develop symptoms. When a child is diagnosed with HIV, a parent may experience
feelings of fear, anger, despair, guilt, secrecy, and grief. Mothers of perinatally
infected children often experience an added burden of guilt and blame placed on
them by society. Foster or adoptive parents may be angry at both the biological
mother and the foster care system. It is important to acknowledge these emotions,
but not dwell on them or reinforce them. This is not the time to blame any one
individuals, but focus on caring for the child and supporting the family as a whole.
Local AIDS and child welfare agencies and counseling services can provide
physical and emotional support for families living with HIV. Many parents also find
it helpful to speak with others who have been through the same experience.
Discussing HIV/AIDS with Infected Children and Siblings
When
you're ready to discuss the diagnosis with your infected and uninfected children,
be honest. Lack of information can cause children to develop their own conclusions
about what is wrong, and those conclusions can often be more frightening than
reality. Remind your infected child that you and the doctor are doing everything to
help him or her feel better. Remind your uninfected children that they are in no
way responsible for their brother or sister's illness and that although their sibling
will require extra care and attention, that you still love them just as much as
ever. Try to create special or quality time with the uninfected children. Also try to
involve them as much as possible in the experienced their sibling is going through.
A brother or sister can be an important source support and a very special advocate
for a sick child. It also benefits the uninfected child to feel useful. Encourage all
of your children to be as normal as possible. Just because a child has HIV doesn't
mean they stop playing or fighting with their siblings. Instead of singling out the
infected child, encourage all of your children to practice good basic hygiene such
as: washing hands frequently, using lotion to avoid dry skin, brushing teethe at
least twice a day, keeping cuts and scratches clean and covered, etc. Since skin is
the immune system's first line of defense, this will help prevent transmission of
germs or bacteria to the immune-compromised child.
Keep explanations as simple and age-appropriate, using concepts that kids can relate to. For example, telling a child that a horrible tasting medicine may help them be able to play longer or run faster will probably get you further than telling them that the medicine will eliminate or prevent an infection. As your child learns more about his or her disease, she or he will probably start thinking about what may lie ahead, including questions about death. This may be a question you aren't prepared to handle. It is certainly okay to say "I don't know" or "we're doing all we can to keep you from getting sicker or dying, and when I learn more about AIDS, I'll tell you everything I know." Eventually, you will need to provide a more complete answer. When that time comes, remember that children often understand much more than adults give them credit for. In a survey done at New Jersey Children's Hospital, almost half of the children (according to their parent or guardian) had not been advised of their HIV status even though many came in for frequent treatments. However, the physician felt that most of the children knew and that some intentionally did not tell their parent or guardian that they knew, for fear of creating more stress.
Parent/Pediatrician Communication and
Shared Advocacy
Caring for an HIV-positive child is a shared responsibility. The
pediatrician, parent or caregiver, and child must all be involved in health
management. When a patient is unable or too young to advocate for her or himself,
it is the responsibility of the primary caregiver to be the voice of the child. It is
also the caregiver's role to track the day- to-day changes in the child's health
essentially becoming eyes and ears for the pediatrician. There are several ways to
encourage better communication:
Special Notes for Pediatricians and other Healthcare Providers
Learn as much as you can about treating HIV. Become familiar with an AIDS Clinical Trial Unit in your area which can provide access to experimental treatments and valuable advise regarding care. Seek advise from other pediatricians immunologist and infectious disease experts. Contact the National Pediatric HIV Resource Center's resource line with specific questions, (800) 362-0071.
Regarding communications with parents:
Do not
assume that caregivers/parents are always the blood parents of your patient or
that the child was infected by the parent. Relay information to parents in a
manner which can be easily understood. Never attempt to tell parents how long their child will survive HIV. Instead, make every effort to involve parents in treatment decisions which can extend the life of an infected child and offer a message of hope. Sometimes "false hopelessness" is worse than "false hope." Please do not wear latex gloves, unless performing an invasive procedure. Children need to be touched by human skin. Touching a child with HIV presents no risk to you and little risk to the child if you follow logical precautions like washing your hands first.
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Talking with Your Child About HIV Infection
Consider your child's age. Talk with your child about HIV when he or she seems ready, possibly around age 5. How you talk with an older child about HIV infection depends on whether the child has had HIV since infancy or is newly diagnosed.
Young children
Children born with the virus have learned a lot about living with HIV infection by the time they reach the age when they can understand what it means to have HIV. Your child will have had regular visits to doctors and other health care providers and will have experienced blood drawing and shots. Taking medicines may be routine. Perhaps your child knows or can say the name of the infection, too.
Young children are usually content with knowing only a little bit about HIV. You can give short, simple answers to most of the questions your young child asks.
School-age children
Older children can understand much more. It is very important to give your child correct information and honest answers about your feelings. Otherwise the child may get the wrong information from someone else.
A child who has HIV infection that is kept secret may suffer silently because of shame or fear. An older child who is having trouble coping with HIV infection may:
Even a young child may have many of the same problems as an adult when dealing with HIV infection. Counselors and health care providers who work with children who have HIV can help you recognize changes in your child's behavior. They can help the child, and you, find ways to talk about these problems.
Older children
The older child--from 12 to 21 years of age--who has recently
become infected with HIV may feel and express many of the same
emotions as an adult in the same situation: disbelief, fear, sadness,
depression, shame. At the same time, the child may behave in some of
the same ways as a younger child.
It is important to talk with older children who have HIV about using condoms for safe sex, as well as the dangers of needle-sharing. It may be very hard to stay calm and neutral when talking with your older child about HIV infection. You may want to arrange for your child to meet privately with an HIV/AIDS health counselor who knows how to interact with teenagers. Ask your child's health care provider to help you find a counselor who can meet with your child.
Talking with your older child in an open and friendly way will do much to ease fears about rejection by other family members and friends. You may decide together whom to tell about the HIV infection and when.
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The Risks and Rewards of Talking About Your Child's HIV Infection
Possible Benefits
Although it is risky, sharing information about your child's HIV infection can be helpful in a number of ways. Telling others may help you seek the medical care your child needs and apply for other kinds of help. You can begin actively planning for your child's care and your family's future.
Your doctor, nurse, social worker, or other members of the health care team can help you plan how and when to share information about your child's HIV infection. They can help you tell others. Your list of people to tell may include:
Your doctor may be required by law to report your child's HIV infection to the state or local health department. Ask about the laws, confidentiality, and anonymous HIV testing in your state.
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