3 Management of children with HIV infection

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Family-centred care

3-1 What is the management of children with HIV infection?

All aspects of the health and emotional wellbeing of an HIV-positive child must be addressed, whether or not the child is receiving antiretroviral treatment. An enormous amount can be done for an HIV-infected child even if antiretroviral treatment is not available. The general management of all HIV-infected children is the same.

If HIV infection is excluded in an HIV-exposed child, the child should be referred to a well-child clinic and requires no further follow up for HIV infection. With the use of antiretroviral prophylaxis perinatally, most HIV-exposed infants will not be infected.

3-2 Where should children with HIV infection be managed?

Every effort must be made to keep HIV-infected children at home with their family and to manage them at a local primary-care clinic. They should only be referred to a special HIV clinic or hospital if there are clear indications.

HIV-infected children should be managed at home if at all possible.

Ideally the community-based primary-care clinic should meet the needs of most HIV-positive children. This requires the integration of many different services (a ‘one-stop shop’). Care at a primary health clinic is usually provided by nurses and not doctors.

3-3 What is family-centred care?

Children should always be seen as a member of a ‘family’ and not simply as an individual. Many of the health problems of children are a direct result of problems within the family (poverty, neglect, abuse, poor education). Therefore the management of any child must take into consideration the family and home environment. Family-centred care (or family-oriented care) is the care of a child as a member of a family. ‘Do not forget the family!’

Ideally the whole family should be cared for by the same staff at the same clinic.

Routine clinical care

3-4 What are the main steps in managing children with HIV infection?

  1. Routine clinical care.
  2. Provide immunisation.
  3. Provide co-trimoxazole prophylaxis.
  4. Monitor and support growth and nutrition.
  5. Monitor neurodevelopment.
  6. Monitor clinical and immunological staging.
  7. Diagnose and manage HIV-associated infections.
  8. Provide counselling and support.
  9. Support and monitor good adherence.
  10. Provide and monitor antiretroviral treatment when indicated.
  11. Help access social grants and other support structures.
  12. Conduct home visits if needed.

3-5 What routine clinical care is needed?

Both HIV-positive and negative children should receive routine clinical care. This is provided at a local primary-care clinic. The ‘well-baby clinics’ and ‘under-5 clinics’ must be integrated into other health services such as maternal care, immunisation and managing sick children.

Routine care includes:

3-6 What special care is needed by HIV-exposed infants?

All infants born to HIV-positive mothers are at risk of being infected themselves with HIV. It is important to determine whether these HIV-exposed infants are HIV infected or not as soon as possible after birth. This is possible with PCR testing:

  1. If the PCR test is positive at birth a confirmatory PCR test is done to confirm the diagnosis of HIV infection. Once the diagnosis is confirmed the child should be fast-tracked for antiretroviral treatment.
  2. If the PCR test is negative at birth the test should be repeated at 10 weeks of age. For infants who receive 12 weeks of NVP as prophylaxis the PCR test should also be repeated again at 18 weeks of age.
  3. Furthermore, if the PCR tests have been negative and the mother breastfeeds, the PCR test should be repeated on her HIV-exposed infant again six weeks after she stops breastfeeding, and at any stage during breast feeding period if clinical features of HIV infection develop.

A positive PCR test should always be confirmed with a second PCR test before HIV infection is diagnosed in a child less than 18 months of age. At 18 months of age all HIV-exposed infants who have previously had negative PCR tests should be tested with a rapid HIV antibody test.

Once HIV infection has been excluded, these infants require only routine care at a well-baby clinic. However, until HIV infection has been excluded, HIV-exposed infants should be followed-up together with the HIV-infected infants.

If a PCR test result is reported as indeterminate then the result must immediately be discussed with an experienced clinician or laboratory specialist as further more advanced testing is required.
Discordant test results occur when the first PCR result is positive but the confirmatory PCR test is negative. All discordant results must immediately be discussed with an experienced clinician or laboratory specialist as further testing is required to finalise the child’s HIV status.

3-7 When should HIV-exposed infants be followed up?

Until HIV infection has been excluded, HIV-exposed infants must be closely followed:

  1. At six weeks, 10 weeks, 14 weeks, 6 months, 9 months, 12 months and 18 months for routine immunisations.
  2. The PCR should be repeated at 10 weeks, and again at 18 weeks if the child received 12 weeks of NVP prophylaxis. If the PCR is negative and the infant is still breastfed, the PCR should be repeated 6 weeks after breastfeeding is stopped.
  3. Co-trimoxazole should be started at 6 weeks if HIV infection has not yet been excluded. Co-trimoxazole should be continued until HIV infection has been excluded 6 weeks after stopping breastfeeding.
  4. Monthly until six months.
  5. Every 3 months from six to 12 months.
  6. Every 6 months from one year.
  7. At 18 months of age all HIV-exposed infants who have previously not been shown to have HIV infection should be tested with a rapid HIV antibody test.
  8. At every visit the child must be weighed and the weight plotted on the Road-to-Health booklet. In addition, the child’s clinical wellbeing should be assessed and the mother given counselling and support. Infants who are not well should be seen more frequently.
  9. If a diagnosis of HIV infection is made, the infant must be started on antiretroviral treatment and followed up monthly.


3-8 Is it safe to give routine immunisations to infants who may be infected with HIV?

It is safe to give most routine immunisations (Expanded Programme on Immunisation) to well HIV-exposed infants in the first months of life. Ideally, BCG should not be given to children known to be HIV infected. However, giving BCG to all infants after delivery, irrespective of their HIV status, is still recommended in countries where tuberculosis is common.

Other routine immunisations should be given to all HIV-infected children even if they have signs of HIV disease.

HIV-exposed newborn infants should receive routine immunisations.

The incidence of disseminated BCG in HIV-infected children, if immunised, is approximately 1000 per 100 000 live births. Therefore some HIV experts feel that HIV-exposed infants should not receive BCG unless a PCR screen at birth is negative.

3-9 What additional immunisation may be useful?

Routine pneumococcal and rotavirus immunisation is being introduced in many countries where HIV infection is common, to reduce the frequency and severity of pneumonia and gastroenteritis in HIV-infected children.

Annual influenza immunization is recommended for all HIV infected children.

Primary prophylaxis

3-10 What is primary prophylaxis?

Most of the morbidity and mortality in HIV-infected children are due to HIV-associated infections. Primary prophylaxis is the use of antibiotics to prevent some of these infections. Therefore primary prophylaxis is an important part of healthcare during the asymptomatic phase of HIV infection.

Secondary prophylaxis is the use of antibiotics to prevent recurrences of HIV-associated infections, i.e. in children who have previously had that HIV-associated infection.

Primary prophylaxis is the use of antibiotics to prevent HIV-associated infections.

3-11 What primary prophylaxis should be provided?

  1. Co-trimoxazole. This broad-spectrum antibiotic helps prevent:
    • Pneumocystis jiroveci pneumonia (PJP – previously known as PCP)
    • Common bacterial infections such as pneumococcal pneumonia
    • Infection with non-typhoid Salmonella
    • Diarrhoeal disease due to Isospora and Cyclospora
    • Co-trimoxazole also reduces the risk of infection with falciparum malaria and Toxoplasmosis.
  2. All HIV-infected children irrespective of age with a close or household TB contact should be given post-exposure isoniazid (INH) prophylaxis for 6 months. Pre-exposure INH prophylaxis is not recommended for HIV-infected children in South Africa. Always exclude active tuberculosis before starting TB prophylaxis.
Co-trimoxazole consists of a combination of sulfamethoxazole and trimethoprim.
Post-exposure prophylaxis is defined as giving patients prophylaxis after they have been exposed to an infected contact. Pre-exposure prophylaxis is giving prophylaxis before exposure to an infection.

3-12 How effective is primary prophylaxis with co-trimoxazole?

It is very effective in reducing illness and deaths due to Pneumocystis pneumonia and common bacterial infections. Pneumocystis pneumonia is the main cause of death in HIV-infected infants, especially infants under six months of age. Pneumocystis infection is particularly common in Africa.

The prophylactic use of co-trimoxazole is simple, cheap, well tolerated and lifesaving. It forms a very important part of the management of HIV-infected children and can halve the mortality from HIV-associated infections.

Co-trimoxazole prophylaxis forms a very important part of the management of HIV-infected children.

3-13 Which children should receive co-trimoxazole prophylaxis?

  1. All HIV-exposed infants below 12 months of age should be given prophylactic co-trimoxazole, starting at six weeks after birth or as soon as possible thereafter and remain on prophylaxis until HIV infection is excluded by testing 6 weeks after stopping breastfeeding.
  2. HIV-infected children less than 12 months of age, regardless of CD4 count.
  3. HIV-infected children aged one to five years with WHO stages 2, 3 or 4 or a CD4 count below 25% or 500 cells/µl).
  4. HIV-infected children older than 5 years with WHO stages 3 or 4 or a CD4 count below 200 cells/µl should be started on prophylactic co-trimoxazole.
  5. Co-infection with TB.

3-14 When should co-trimoxazole prophylaxis be stopped?

  1. Cotrimoxazole prophylaxis should be stopped in HIV-exposed children once HIV infection has been excluded by PCR testing, 6 weeks after breastfeeding is discontinued.
  2. In HIV-infected children aged 1 to 5 years, cotrimoxazole prophylaxis should be stopped if the CD4 is above 500 cells/μl on two consecutive occasions
  3. In HIV-infected children aged above 5 years cotrimoxazole prophylaxis should be stopped if the CD4 is above 200 cells/μl on two consecutive occasions

HIV exposed infants should have co-trimoxazole prophylaxis from six weeks until HIV infection is excluded.

3-15 How should co-trimoxazole prophylaxis be given?

Infants should be given co-trimoxazole syrup. Older children may be given single-strength tablets. WHO recommends a daily dose. The daily dose depends on the child’s weight.

Table 3-1: Daily dose of co-trimoxazole by weight band

Weight Daily dose
< 5 kg 2.5 ml paediatric suspension
5-14 kg 5 ml paediatric suspension or ½ regular strength tablet
15-29 kg 10 ml (or 1 regular strength tablet)
> 30 kg 2 regular strength tablet)
Several alternative co-trimoxazole regimens are effective. However, the above regimen is preferred.

3-16 How common are side effects to co-trimoxazole?

Side effects are uncommon in children. The commonest side effects are skin rashes, which usually occur in the first few weeks of treatment. These are usually mild erythematous rashes. However, they can be serious. Parents must stop the co-trimoxazole and bring the child to the clinic if the child develops a generalised, maculopapular rash, skin blisters or mouth ulcers, as these are the signs of serious hypersensitivity to the drug.

Co-trimoxazole may rarely cause hepatotoxicity and bone marrow suppression. Children with G6PD deficiency should not be given co-trimoxazole or dapsone as these drugs can cause acute haemolysis.

3-17 Should children receiving co-trimoxazole be routinely monitored for side effects?

A careful watch should be made for a rash. Routine laboratory tests are not needed.

3-18 What can be done if children cannot receive co-trimoxazole?

Children who have developed side effects to co-trimoxazole should be given dapsone instead. The dose of oral dapsone is 2 mg/kg daily up to an adult dose of 100 mg daily. A solution of crushed tablets are used. Unfortunately dapsone is not as effective as co-trimoxazole in preventing Pneumocystis pneumonia and it does not provide prophylaxis against other organisms.

If the side effects to co-trimoxazole are only moderate or severe (grade 2 or 3) the child can be referred to an antiretroviral centre for desensitisation with low doses of co-trimoxazole. Co-trimoxazole should never be given again after a potentially fatal (grade 4) reaction.

Nutrition and growth

3-19 Why is good nutrition so important in children with HIV infection?

In all children, good nutrition plays an important role in helping to maintain the normal functioning of the immune system. In contrast, malnutrition (undernutrition) weakens the immune system. Therefore, poor nutrition is especially dangerous in HIV-infected children, placing them at even greater risk of HIV-associated infections. Unfortunately, children with HIV infection are often undernourished.

Good nutrition is an important part of managing children with HIV infection.

3-20 Why is undernutrition common in children with HIV?

  1. A poor appetite is common in ill children.
  2. They may have a sore mouth or swallowing difficulties due to candidiasis.
  3. Loss of nutrients due to chronic diarrhoea.
  4. Increased nutritional needs due to infections, especially tuberculosis.
  5. Inadequate care and feeding at home, especially if the mother has AIDS.

3-21 How is the nutritional state routinely monitored?

  1. By regularly weighing the child at each clinic visit. Good weight gain on the Road-to-Health booklet is the best indicator that the child is well nourished. A careful nutritional and social history must be taken of children who fail to thrive or who lose weight. Supplementary feeds should be given to children who fail to gain weight normally. This can usually be obtained from the nutrition clinic.
  2. Head circumference and height (length until the child can stand) are important to measure in children who do not have a normal weight gain.
  3. The haemoglobin concentration must be determined to screen for anaemia in children who appear pale.

Always look carefully for missed infections in undernourished children (especially tuberculosis). Infections often lead to a rapid deterioration in the child’s nutritional state.

3-22 How can parents improve their child’s nutrition?

It is important that parents are aware of the importance of good nutrition and have the knowledge to give their children the correct foods. The nutritional value of meals can be improved by:

  1. Using starchy foods as the basis of most meals to provide calories, e.g. porridge, samp (mielies), rice or potatoes.
  2. Adding 1–2 teaspoons of vegetable oil, margarine or peanut butter to provide added calories.
  3. Using wholewheat or brown bread rather than white bread.
  4. Providing protein with fish, eggs and meat (expensive) or beans, peas, lentils or soya products (cheaper). Milk (breast milk or formula) usually is the main source of protein during the first year of life. Skimmed milk powder or fresh cows’ milk can be used after one year to add protein to the diet.
  5. Using only a little fat and salt.
  6. Buying fruit in season (expensive) or fresh vegetables (cheaper). Do not overcook vegetables as this damages vitamins.
  7. Use a variety of foods, mixing starch, protein, vegetables and fruit. Cultivating a vegetable garden can save costs.
  8. Avoid sweets, potato chips, cool drinks and ‘junk’ foods which are often expensive and of little nutritional value.
  9. Access food supplements if needed and available.

A balanced, mixed diet need not be expensive.

3-23 What vitamin supplements are necessary?

Vitamin A is important in maintaining a healthy immune system. All children with HIV infection should be given oral vitamin A supplements.

  1. 50 000 iu once if under 6 months (best at 6 weeks), then:
  2. 100 000 iu once if 6 to 12 months, then:
  3. 200 000 iu every 6 months between 12 months and 5 years.

Although a standard paediatric multivitamin supplement 5 ml daily is often recommended, this has not been shown to be necessary unless the child is undernourished.

Zinc supplements (10 mg elemental zinc as zinc sulphate daily) from 6 months of age reduces morbidity from diarrhoea.

3-24 Is regular deworming important?

Yes. It is important to regularly deworm all young children, but especially children with HIV. Deworming every 6 months is recommended for children between the ages of 1 and 5 years in communities with poor hygiene and inadequate sanitation (poor toilet facilities). This should be done even if there is no history of roundworms in the stool. Medication is usually given at the local primary-care clinic or in schools. Deworming has been found to improve the learning capacity and growth of school children.

Mebendazole is the drug of choice. Albendazole is more expensive. Both these drugs are highly effective for roundworms. The dose for deworming is:

  1. Mebendazole orally 100 mg (i.e. 1 tablet) if below 2 years old and 500 mg as a single dose if two years or older
  2. Albendazole as a single dose 200 mg for children below 2 years old and 400 mg for children of 2 years or older

3-25 What is the importance of teeth care?

Dental care is important as dental caries are very common in children with HIV. Bad teeth may also reduce nutrition intake. Daily brushing of the teeth and restriction of sweetened food and drinks helps to keep the teeth healthy. Most children cannot brush their own teeth adequately until the age of seven years. Therefore, the caregiver should do the brushing with a gentle action, using a soft toothbrush. If the caregiver cannot afford toothpaste, salt may be used. Children with dental caries should be referred to a dentist for treatment.

3-26 What should be done if a child is failing to thrive?

  1. Carefully weigh the child and plot the weight on a growth chart.
  2. A careful family and nutritional history must be taken. It is important to determine whether the child is receiving a good diet. A poor diet as a result of poverty, ignorance or ill parents is a common cause of failing to thrive with poor weight gain or actual weight loss.
  3. The child should have a full clinical examination to look for signs of malnutrition, clinically stage the HIV, and check for HIV-associated infections. Malnutrition usually presents with wasting of muscles and subcutaneous fat.
  4. TB should be excluded.
  5. If a poor diet is the cause of the failure to thrive, the child needs nutritional support and the parents need education and support.
  6. The child will need appropriate medical management if the HIV staging is 2 to 4 or an HIV-associated infection is present.

3-27 How can nutrition be supported?

Children who fail to thrive despite optimal medical treatment may require additional nutritional support. Ideally they should be assessed by a dietician. Additional protein and calorie intake should be considered up to 150% of the daily recommended allowance.

3-28 Why is regular exercise important?

Although rest is important, children also need regular exercise to grow and develop normally. Most well HIV children can play sport normally. Play is important for all children.

It is essential that children with HIV mix with other children in play groups and at school. They should attend normal schools as they are not a risk to HIV-negative children.

Monitoring neurodevelopment

3-29 How should neurodevelopment be monitored?

Neurodevelopment as well as physical growth should be routinely monitored in all children, but especially children with HIV infection. Developmental milestones are used for the routine monitoring of neurodevelopment. The development screening guideline in the child’s Road-to-Health booklet should be used to monitor neurodevelopment and identify children with clinically significant neurodevelopmental delay who require referral.

3-30 Why are delayed milestones important to detect?

One of the first and most important clinical features of symptomatic HIV infection in children is a delay in developmental milestones. Children with advanced HIV disease may also have a slowing of head growth (head circumference).

3-31 Why do children with HIV infection often have delayed milestones?

  1. They may have HIV-associated infections.
  2. They may be malnourished.
  3. They may have HIV encephalopathy.
  4. They may have little stimulation because of poverty, ill or depressed parents, and frequent or long periods of hospitalisation.

3-32 When should neurodevelopmental screening be done?

Neurodevelopmental screening of all children including HIV exposed and HIV infected children should be performed at 14 weeks, 6 months, 9 months, 18 months, 3 years and 5 to 6 years of age.

Screening for HIV-associated infections

3-33 Why is it so important to screen for HIV-associated infections?

Because HIV-infected children usually present clinically with an HIV-associated infection. These infections are often the final cause of death. Therefore it is vitally important that HIV-associated infections are detected and diagnosed as soon as possible so that early treatment can be started.

3-34 How should you screen for HIV-associated infections?

By taking a careful history and performing a good clinical examination at every follow-up visit. Important questions to ask (‘red flags’) are:

  1. Has the child become unwell recently?
  2. Does the child have a poor appetite?
  3. Does the child have a sore mouth or difficulty swallowing?
  4. Does it look as if the child has lost weight?
  5. Does the child have loose stools?
  6. Does anyone in the family have tuberculosis?
  7. Does the child cough?

Important clinical signs are:

  1. Weight loss
  2. Fever
  3. Oral thrush or mouth sores
  4. Skin rash
  5. Enlarged lymph nodes, parotid glands, liver or spleen
  6. Signs of upper or lower respiratory tract infection

Any child with a suspected or obvious HIV-associated infection may require appropriate investigation and treatment, or be referred immediately.

Care of adolescents with HIV infection

3-35 What is an adolescent?

The WHO defines adolescence as young people between the ages of 10 and 19 years. Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood. Adolescents require special care as their needs are different from those of both children and adults. The first signs of puberty (breast buds, testicular enlargement and pubic hair) usually indicate that the child should be regarded as an adolescent.

Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood.

3-36 Why are the needs of adolescents different?

Because they are growing rapidly, becoming sexually mature, and undergoing major emotional, psychological and social changes.

  1. During early adolescence (10 to 13 years) their self-image is changing as they are experiencing the start of puberty, they have intense feelings and mood swings, they feel a need for privacy, and have close relationships with friends of the same sex.
  2. During middle adolescence (14 to 16 years) they are reaching the end of puberty, conflict with family is common and they identify strongly with their peers of both sexes. Many feel invincible (‘it can’t happen to me’). Rebelling, rejecting parents’ values and high-risk behaviour is common.
  3. During late adolescence (17 to 19 years) they are more responsible, consider the feelings of others, develop mature long-term sexual relationships with less risk-taking. Some adolescents are physically but not emotionally mature.

The WHO recommends the use of paediatric clinical staging charts and criteria for starting antiretroviral treatment for adolescents younger than 15 years of age and adult clinical staging charts and starting criteria for adolescents who are 15 years of age or older. Paediatric doses of antiretroviral drugs are usually recommended for adolescents in early puberty (Tanner stages 1 to 3) and adult doses for adolescents in late puberty with full physical maturation (Tanner stage 4 and 5).

Tanner stages 1 to 3 includes growth spurt, but only early signs of breast and genital development, while stages 4 and 5 are almost complete sexual maturation.

3-37 Why do adolescents have greater health risks?

  1. High-risk behaviour is common. Sexual promiscuity, smoking, drinking and drug abuse are problems. Due to their insecurity and lack of experience, adolescents are sexually vulnerable.
  2. They often give in to peer pressure and are unable to set limits. Parents have less control and antisocial behaviour is common.
  3. They often distrust health workers.
  4. Depression is common in HIV-infected adolescents.
  5. They may not have parents. Some are ‘AIDS orphans’. Others may be the head of the household or have ill parents.
  6. They may deny that they have HIV infection.
  7. Adherence is often poor. It is not ‘cool’ to take medication.
  8. Disclosure is difficult and stigma causes fear and anxiety. Shame, anger and guilt are common reactions.

3-38 Which adolescents may have HIV infection?

  1. Adolescents who were perinatally infected and have had HIV infection since birth or the first months of life. Many HIV-infected infants are now surviving into adolescence. Most will already be on antiretroviral treatment. They may have retarded growth and development, delayed puberty or signs of chronic illness. Schooling may have been interrupted due to illness. They may also have lost one or both parents from HIV infection.
  2. Adolescents who have been infected recently via sexual intercourse. This might be with or without consent. It is estimated that 20% of young women below 20 years of age in South Africa have HIV infection. This makes up about a third of all new HIV infections each year.

3-39 Which adolescents are most sexually vulnerable?

Boys usually have an earlier sexual debut (first experience) than girls. However, the prevalence of HIV infection is much higher in adolescent girls than boys, as young girls usually have older male partners. Girls, especially homeless or orphaned girls, may also be sexually abused or sell/swap sex for financial or other favours. The immature cervix is easily infected by HIV.

During adolescence girls are at higher risk of HIV infection than boys.

3-40 What is a youth-centred approach to HIV counselling?

Every effort should be made to meet the special needs of adolescence. This is best done at a youth centre. This is a clinic where the facilities, staffing and care are designed to make it user-friendly to both HIV-positive and negative adolescents. The features of a youth centre are:

  1. Adolescent-friendly staff who are warm, non-judgemental and respect and understand the common problems. They need to be able to openly discuss sensitive issues. Some adolescents do not want their parents to know that they have become HIV-positive. In South Africa children of 12 years or older do not need parental consent for care. Afternoon clinics will not interfere with schooling.
  2. An informal atmosphere where adolescents feel at ease. If possible, the adolescent should always see the same health worker who they should know by name.
  3. Peer support groups.
  4. Meet all the health needs of adolescents.
  5. The ability to counsel and screen for HIV. Language and cultural differences should be respected.
  6. The ability to manage an HIV-infected adolescent. The staff need skills to handle issues of disclosure, stigma, depression and adherence. Adolescents need to learn to manage their own treatment.
  7. Provide condoms and family planning support.
  8. Treat other sexually transmitted infections.

If there is no youth centre, general HIV clinics should at least be adolescent friendly. The staff usually consists of nurses, doctors, counsellors, social workers and psychologists who work together as a multidisciplinary team. It is hoped that more youth centres (adolescent-friendly centres) will be opened in future.

An adolescent-friendly approach with peer support is very important.

3-41 How can adolescents protect themselves from HIV infection?

  1. Delay sexual debut for as long as possible. Adolescents need to learn how to overcome the peer pressure to become sexually active.
  2. Always use a condom. Girls need to learn how to negotiate safer sex.
  3. Limit the number of sexual partners.
  4. Schools must provide healthy lifestyle education.
  5. Avoid dropping out of school early.
  6. They should be encouraged to know their HIV status.
  7. They should have any sexually transmitted infection diagnosed and treated early.

All adolescents must have sex education and be given the life skills to protect themselves and others from HIV infection. This should be taught in the home, schools, peer groups and health services. They need to become confident and have the knowledge to take responsibility for their lives.


3-42 Should HIV-infected children be told their HIV status?

Yes, but only when they have reached an age and stage of maturity when they can understand and handle this information. Revealing a child’s HIV status is a process over a number of years and not a once-off event. It can be compared to telling an adopted child the details of their parents and the adoption, or providing a child with sex education. They are provided with a little information at a time in a step-wise fashion. This is best done by simply and honestly answering their questions. It can be frightening and confusing to give too much detailed information too soon.

Parents often find this difficult and need the advice and support of health professionals. Failure of full disclosure by the time adolescence is reached can result in emotional difficulties, a lack of trust in the parents and health workers, and poor adherence. Every effort should be made to get the parents to agree to the disclosure.

It is important to give children information about their HIV status when they reach an appropriate age to accept the facts.

3-43 At what age should children be given information about their HIV status?

  1. Very young children (below 5 years): Disclosure usually is not necessary. Comfort, support and security are most important. They need to feel loved and cared for. Children can be present during consultations with health workers and they should be congratulated for taking their medicine. They need confidence in the health workers and accept taking medicine every day.
  2. Young children (5 to 7 years): Disclosure can be started by linking medicines and diet to good health. Often the idea of ‘goodies’ (the blood cells which are ‘soldiers’) and the ‘baddies’ (which are the viruses) is used. They need to understand that taking medicine will keep them well. They should never be made to feel guilty. HIV infection is not their fault.
  3. Older children (8 to 11 years): Partial disclosure with a better understanding of viruses and immunity. The word ‘HIV’ can be used. They should restrict this private information to their parents and carers. Older children have rights to both know their diagnosis and take part in treatment decisions. Always be honest.
  4. Young adolescence (12 years and older): Full disclosure is now needed. They need to know the cause, clinical problems, management and prognosis of HIV infection. It is very important that they are educated about ‘safer sex’. They also need to learn how to disclose their HIV status to their close friends. Teenagers need support and counselling as they become independent of their parents. Written information is useful.

HIV-infected children often have a developmental age below their age in years. This should always be taken into consideration when counselling. Be led by the child’s questions and use language that the child can understand.

3-44 Who should tell children about their HIV status?

Usually parents are afraid but still prefer to provide this information themselves. They may need advice, encouragement and support from health workers. Some parents have difficulty with guilt and denial about their own infection and transferring HIV to their children.

Case study 1

An HIV-positive mother is told at the local clinic that it will be dangerous to immunise her six-week-old infant. She is asked to come back when the infant is three months old. No medications are given as the infant appears healthy.

1. Should all children born to HIV-positive mothers receive routine immunisations?

Yes, they can be fully immunised, including BCG immunisation.

2. What medications should this child have received?

Prophylactic co-trimoxazole from 6 weeks. This can be stopped if HIV infection is excluded with a negative PCR test.

3. Why is this prophylaxis given?

Because it reduces the risk of Pneumocystis pneumonia. It also reduces the risk of some serious bacterial infections.

4. For how long should primary prophylaxis be continued in young children with HIV infection?

Usually for the first year of life and thereafter until immune recovery has occurred. The risk of Pneumocystis pneumonia is less in older children.

5. What is the important side effect of co-trimoxazole?

Rash. This is usually mild but can be severe and even life threatening, especially in adults. Therefore parents should be warned to return to the clinic immediately if the child develops a rash.

Case study 2

A mother and her two HIV-infected children attend a primary-care clinic for a routine follow-up appointment. The clinic practises family-centred care. She is concerned as her four-year-old daughter has lost weight recently. A neighbour said that the child may have worms.

1. What is family-centred care?

With family-centred care the whole family is taken into consideration when the child is seen. Many of the health problems in children are a direct result of family problems such as poverty, neglect and abuse. Therefore the family cannot be ignored.

2. How should growth be monitored?

By plotting the child’s weight on the Road-to-Health booklet. It is particularly important to chart this child’s weight as there is some concern that she has lost weight recently.

3. Why may an HIV-infected child lose weight?

4. Can worms be a problem in HIV-infected children?

Yes. Therefore they should be regularly dewormed every six months. Usually mebendazole or albendazole is used.

5. What vitamin supplements should this child receive?

Vitamin A.

Case study 3

An adolescent is seen by a general practitioner as she is embarrassed to attend the local clinic. The doctor diagnoses primary syphilis and is concerned that she is not practising safer sex. After counselling her, he performs a rapid test for HIV and this is positive.

1. When does a child become an adolescent?

The WHO defines adolescence as young people between the ages of 10 and 19 years. Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood. The first signs of puberty usually indicate that the child should be regarded as an adolescent.

2. Why do you think the patient is unhappy to attend the local clinic?

Because the clinic does not have a ‘youth-centred’ approach.

3. What could the clinic do to be more user-friendly to adolescents?

Train their staff to be adolescent-friendly by being welcoming, non-judgemental and to respect and understand the concerns of young people. Adolescents prefer an informal atmosphere and appreciate peer support groups.

4. How do you think this adolescent became HIV infected?

Almost certainly by sexual intercourse as she has another sexually transmitted infection. However, some perinatally HIV-infected children are now reaching adolescence.

5. Why are young women sexually vulnerable?

Because they often are still emotionally immature and inexperienced. Therefore they are at risk of abuse and may sell sex to older men for financial or other favours.

6. How can adolescents protect themselves from HIV infection?

By delaying sexual debut, limiting the number of sexual partners and always using a condom. In order to achieve this they need education about how to live a healthy lifestyle.

Case study 4

An HIV-infected woman asks a nursing friend how she should tell her young son that he also has HIV infection. He is starting to show the first signs of puberty.

1. Should children be told their HIV status?

Yes, but only when they have reached a stage of maturity when they are old enough to understand what this means and to emotionally handle the information. It is not helpful to provide too much information too soon. Older children have the right to know their status.

2. At what age should their HIV status be disclosed?

This should be a slow process starting when the child is young. As they grow older they can be given more information. Very young children need security and encouragement to take their medication. By the age of 5 most children can understand that they have a chronic illness and why they have to take regular medication. Older children can be given information about HIV and the implication this has in their lives. As this child is entering puberty he should be able to accept and understand the cause, clinical symptoms and prognosis of HIV infection.

3. Who should provide this information to children?

Their parents or carers if possible. Parents often find this difficult and need the advice and support of health workers.

4. What is the best way of providing HIV information to children?

By answering their questions simply and honestly.

5. Should this child have sex education?

Yes. This is very important so that he can prevent spreading HIV to others.

6. Who should be told that he is HIV-positive?

At this age only family and close friends. Children may need help and support in disclosing their HIV status.