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Caring with confidence
  >  Section 3: Diagnosis, treatment and care 
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Section 3: Diagnosis, treatment and care

Caring with Confidence - Practical information for health workers who prevent and treat HIV infection in children

Acknowledgements
Introduction
How HIV and AIDS affect young children
Preventing HIV infection in young children
Diagnosis, treatment and care
Issues for health workers
Selected resources
Glossary
Appendix 1
Appendix 2

 

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3.1 Diagnosis and testing of infected children

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Diagnosis

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Clinical signs and symptoms

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HIV counselling and testing

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Birth to 6 Months

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Issues to consider in testing children for HIV

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Diagnostic tests

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3.2 Treatment and care

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Basic care and support needs for all children - with and without HIV

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Prevention, treatment and supportive care at home

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Preventing transmission of HIV at home

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Helping children to stay well

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Nutrition and children with HIV and AIDS

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Feeding and illness

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Safe preparation of food

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Taking care of common conditions

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How to give oral rehydration salts (ORS) solution

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How to make gentian violet solution

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Giving medicines to children

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Management of common infections at primary care level

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Clinical follow-up

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Referral and treatment

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Immunisation: protecting against common childhood infections

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Palliative care in terminal HIV/AIDS

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Drugs for treatment of children with HIV and AIDS

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3.3 Affected children

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What can health workers do?

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Child rights and HIV and AIDS

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Community-based support programme

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Strategies for dealing with children orphaned by HIV and AIDS





Caring with confidence   
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  Section 3: Diagnosis, treatment and care

 

This Section describes how HIV and AIDS affects children's health and issues related to diagnosis in young children. It provides a practical overview of management and care for children with HIV and AIDS at community and primary care levels, including prevention, supportive care, treatment of common illnesses and referral. Finally, it discusses care for children affected by HIV and AIDS.

3.1 Diagnosis and testing of infected children

Key Points 
 

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Many HIV-infected children die from common childhood illnesses.

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Diagnosis of HIV in young children is often based on clinical signs. However, clinical diagnosis is difficult.

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Where available, an HIV test can confirm the clinical diagnosis.

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Counselling for family members and children should precede and follow any diagnostic tests.


HIV infection is a chronic condition which ranges from no symptoms to AIDS.

Infections in HIV-positive children are usually caused by the same pathogens as in HIV-negative children, but tend to be more frequent with repeated infections more common. Children with HIV also have a greater risk of pulmonary tuberculosis. However, infections in HIV-positive children can sometimes be caused by more unusual opportunistic infections which respond poorly to treatment. 

In general, the management of specific conditions in HIV-infected children is similar to that in other children. Many HIV-infected children die from common childhood illnesses, rather than from AIDS. Most of these deaths are preventable by early diagnosis and correct management of childhood infection. Ensuring that all children get the best practical treatment for common illnesses is the best way of caring for children with HIV.

Although some children with HIV stay well for many years, especially if they receive good nutrition, treatment and care, some become sick and develop HIV disease and AIDS-related symptoms soon after HIV infection. These children may get sick more quickly than adults who can be free of symptoms for many years. This is possibly because an infant's immune system is not fully developed and is less able to fight the virus. 

Children may also die more quickly than adults after becoming infected with HIV. Worldwide, about half the infected infants will die before the age of five years. 

Children with HIV infection in developing countries become ill and die more rapidly than those in industrialised countries, because of lack of appropriate treatment and care, poor nutrition and infectious diseases to which they are very vulnerable. In Zambia, for example, nearly half of infected children die before the age of two, and in one Ugandan study two-thirds had died by the age of three.
 
Diagnosis 
HIV in infants and young children is diagnosed on the basis of clinical signs confirmed by diagnostic testing. In many countries, clinical diagnosis alone is used because laboratory testing is expensive or not available, and because HIV antibody testing - the most commonly used method - does not give a true picture of a child's HIV status before the age of 15-18 months. A definitive diagnosis of HIV, if it is made at all, is most likely to be made at referral level.
 
Clinical signs and symptoms 
The clinical expression of HIV infection in children is highly variable. A proportion of HIV-positive children develop severe HIV-related symptoms in the first year of life; these signs are associated with high mortality. Other HIV-positive children may remain asymptomatic or mildly symptomatic for more than a year and may survive for many years.



    


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   Section 3: Diagnosis, treatment and care

 

Symptomatic HIV infection 

In developing countries children with HIV often have the same illnesses as children without HIV infection.


In developing countries, children with HIV often have the same illnesses as children without HIV infection and, like children without HIV, are killed by common infections such as diarrhoea, measles and respiratory infections. 

This makes clinical diagnosis of children with HIV difficult and, without access to laboratory testing, health workers may not be able to distinguish HIV-positive children from other children. 

However, unlike other children, infants and children with HIV infection may have:
  

bulletcommon illnesses that are more severe, more frequent and more persistent 
bulletrecurrent serious systemic bacterial infections 
bulletopportunistic infections. 


HIV-positive children have symptoms which include failure to thrive, wasting, weight loss, persistent and recurrent diarrhoea, repeated attacks of oral thrush, otitis media and skin rashes, recurrent fever and delayed development. 

In addition, they may not respond so well to standard treatment and are also more likely to suffer from recurrent or serious bacterial infections with life-threatening conditions such as septicaemia, meningitis and abscess. 

Signs 
The following signs are less common in children without HIV: 
  

bulletrecurrent infection - more than two severe episodes of a bacterial and/or viral infection (pneumonia, meningitis, sepsis, cellulitis) in the past 12 months
bulletoral thrush - the presence of white plaques (spots) inside the mouth. After the neonatal period, the presence of oral thrush without previous antibiotic treatment or lasting more than 30 days despite treatment, is highly suggestive of HIV infection 
bulletherpes zoster - also known as shingles, a skin condition characterised by a painful
bulletrash with blisters confined to one part of the body 
bulletchronic otitis media - ear discharge lasting 14 days or more 
bulletchronic parotitis - the presence of swollen glands just in front of the ear for 14 days or more. There mayor may not be any associated pain or fever and the swelling may be on one or both sides
bulletgeneralised lymphadenopathy - the presence of enlarged lymph nodes without any apparent underlying cause 
bulletpersistent and/or recurrent fever - fever (over 38C) lasting for seven days or more,
bulletor occurring more than once over a period of seven days
bulletneurologic problems - development delays, failure to reach developmental milestones.


The following two signs are common in non-HIV-infected children as well as in HIV-positive children: 
 

bulletpersistent diarrhoea - diarrhoea lasting 14 days or more
bulletfailure to thrive - a marked downward change in expected growth as indicated on the child's growth card.



    


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   Section 3: Diagnosis, treatment and care

 

Conditions specific for HIV infection in children 
The following conditions are known to be very specific to HIV -infected children. However, diagnosis of these conditions is difficult with limited diagnostic facilities.
  

bulletPneumocystic carinii pneumonia (PCP) - a diagnosis of PCP should be made in a child who has severe or very severe pneumonia and filling up of the small spaces in the lungs revealed by chest x-ray. The possibility of PCP should also be considered in children known or suspected to have HIV with ordinary pneumonia but who are not responding to treatment. 
bulletOesophageal candidiasis - the child may have difficulty or pain while vomiting or swallowing, reluctance to take food, salivation, crying during feeding and weight loss. The condition may occur with or without evidence of oral thrush. If oral thrush is not found, other causes of painful swallowing (such as cytomegalovirus, herpes simplex, lymphoma, carcinoma and, rarely, Kaposi sarcoma) may have to be ruled out, usually at a higher referral level.
bulletLymphoid interstitial pneumonitis - the diagnosis of lymphoid interstitial pneumonitis (LIP) is difficult. In general it requires confirmation by a chest x-ray. The child is often asymptomatic in the early stages but may later have a cough, with or without difficulty breathing and signs of hypoxaemia such as finger clubbing.
bulletKaposi sarcoma - this is rare in children. Diagnosis needs to be confirmed by skin biopsy. 

 
There are problems with using clinical symptoms as the basis for diagnosis of HIV in children. 
  

bulletClinical diagnosis is difficult, because many of the signs are common in children whether they are infected with HIV or not. For example, children with tuberculosis who do not have HIV fail to gain weight, have intermittent fever and chronic cough. Children with HIV who do not have TB have the same symptoms. 
bulletThe clinical criteria therefore lack specificity (some children may be diagnosed as infected when they are not) and sensitivity (some children who are infected may not be diagnosed as having HIV).
bulletThe emphasis on chronic illness means that acute illnesses, which also contribute to death in infants and young children with HIV, may be missed.
bulletSome illnesses are more difficult to diagnose in children with HIV. For example, children with HIV who have tuberculosis may be tuberculin test negative because their immune system is not functioning well, and may have different symptoms such as fever without a cough.  

 
HIV counselling and testing 
If the child's HIV status is not known, but there are reasons to suspect HIV infection (based on clinical signs or diagnoses in the family), WHO and UNAIDS recommend that the child should be tested for HIV where possible. Although maternal antibodies interfere with conventional serological testing under the age of 15 months, if the child is suspected to have HIV on clinical grounds, WHO suggests that both the mother and child should be tested to rule out other HIV-associated and potentially treatable clinical problems such as tuberculosis. In addition, if it is known that the mother became infected after delivery, the presence of antibodies in the first year of life are indicative of HIV infection in the infant. 
 

Birth to 6 Months 
 

A few babies with HIV are small at birth and fail to thrive. Many develop symptoms at about three or four months of age. These symptoms may include severe bacterial infections (such as meningitis, severe skin infections or itchy rashes, pneumonia), swollen lymph glands in the neck or under the armpits, swollen stomach (because of enlarged liver or spleen), failure to thrive, and fungal infections, especially oral thrush. Babies may also cry constantly or be irritable.

Six months to 15 months 
Growth faltering, often with illnesses such as malaria, diarrhoea or ear infections (otitis media), is common. Persistent diarrhoea and respiratory (cough) and lung (pneumonia) infections may also be frequent. Babies may also be slow to crawl or unable to sit.

Over 15 months 
In addition to the symptoms in children aged 6-15 months, those aged over 15 months may also have itchy rash (eczema), swollen glands, chronic cough and persistent oral thrush. They may be slow to start walking or talking. Upper respiratory infections may become chronic and otitis media may develop into mastoiditis. 



    


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Issues to consider in testing children for HIV 
  

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Antibody testing an infant before the age of 15 months will only provide information about the HIV status of the mother. If other methods (such as polymerase chain reaction - PCR) are available for testing the child, ask whether the parents want to know the child's HIV status or is it the health worker that wishes to know.

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Are pre-and post-test counselling available to the mother and other family members to help them understand the implications of testing the child and to make an informed decision? Testing the child should never be used as a means of indirectly testing the mother.

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Are staff available who have the training and skills to counsel parents if their child is discovered to have HIV?

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If a child is found to be positive, will this help the child to get the special care and attention he or she needs? For example, will infections which could become serious such as diarrhoea or pneumonia be identified and treated more quickly?

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Is there a danger of discrimination against the infant if he or she is diagnosed as HIV infected?

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Will it help parents to know why the child is frequently sick? Will it prevent them spending money and time seeking a cure?

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Is there a danger that, if they do not know the child has HIV, they may believe that immunisation or ORS do not work and may fail to give these to their other children?

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Will knowing the child's HIV status change your advice to parents about care of the child including preventing infections and seeking help promptly from a health worker if the child becomes sick?

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Is it possible to refer the mother and child for support and counselling or to a community care programme? 

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Because diagnosis of HIV in a child probably means that the mother also has HIV infection, and possibly also the father, what implications will this have for the family?


An HIV test can confirm the clinical diagnosis, alert the health worker and parents to HIV-related problems, and discuss prevention of mother-to-child transmission (including where possible prevention using antiretrovirals). If the child does have HIV, the parents and child will know why the child is frequently sick, and parents will know how to manage the child. In theory the child can also be referred to appropriate facilities, for support, counselling and treatment or for home-based care. However, health workers need to decide whether testing the child and discovering that he or she has HIV infection provides any benefits, and what impact a positive test result would have on the mother and other members of the family. Issues to be considered are included in the box above. 

In settings where there is no access to HIV testing, health workers must assess the possibility that the child has HIV on the basis of clinical signs and symptoms. They should also remember that treatment and care of common infections is the same in all children, regardless of HIV status, but that they should be alert for children who respond poorly to standard treatment or have frequent or more severe infections. 

Counselling both before and after testing is essential. HIV counselling should take account of the child as part of a family, including the psychological implications of HIV for the child, mother, father and other family members. Counselling requires time and needs to be done by knowledgeable staff. Staff at first referral level may not have sufficient experience to provide counselling. If the first level health worker is not doing the counselling, the reason for referral to counselling should be discussed with the parent. 

HIV counselling is indicated in the following situations, if a child: 
  

bullethas an unknown HIV status and presents with clinical and/or epidemiological risk factors 
bulletis known to be HIV positive and is responding poorly to treatment or needs further investigations
bulletis known to be HIV positive and has responded well to treatment prior to discharge and referral to a community-based care programme for psychosocial support. 


In children with an unknown HIV status:
  

bulletmanage emergency conditions if present (the treatment is the same for HIV-infected and uninfected children) 
bulletmanage other associated conditions
bulletdecide if you will do the counselling or need to refer the child 
bulletif a health worker is doing the counselling, then he or she needs to make time for the counselling session, and the following should be considered during the counselling session:
 
bulletreason for considering HIV infection 
bulletHIV transmission routes in children, prevention of transmission in a family setting 
bulletmanagement and follow-up issues 
bulletrisk factors for illness 
bulletimmunisation and HIV 
bulletbreastfeeding and HIV 
bullethow the HIV test is done
bulletthe implications of a positive result in the child and /or parents.


In children who are known to be HIV positive and respond poorly to treatment or need further investigations, the following discussions should form part of the counselling sessions: 
  

bulletthe parents' understanding of HIV infection 
bulletmanagement and follow-up 
bulletrisk factors for illness 
bulletimmunisation and HIV 
bulletthe need to refer to a higher level.


In children who are known to be HIV positive and respond well to treatment prior to discharge and referral to a community-based care programme for psychosocial support, the following discussions should form part of the counselling session: 
  

bulletthe reason for referral to a community-based care programme
bulletmanagement and follow-up 
bulletrisk factors for illness 
bulletimmunisation and HIV.



    


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   Section 3: Diagnosis, treatment and care

 

Diagnostic tests 
There are several diagnostic methods for detecting HIV in infants and young children, including testing for HIV antibodies, viral culture and polymerase chain reaction (PCR) testing.

HIV antibody testing 
 

Antibody testing is the most widely available method of diagnosing HIV. 

Antibody testing is the most common and widely available method for diagnosing HIV. An HIV test - usually an ELISA (enzyme-linked immunosorbent assay) test - detects antibodies to HIV in the blood. These antibodies are produced by the body's immune system in response to infection with the virus.

If there are no antibodies, the person is antibody negative (seronegative or HIV negative). In adults, the test may be negative if they have only recently been infected because it can take up to three months from the time of infection before antibodies are produced. This is called the 'window period'. 


In infants and young children, antibody testing is more complicated. This is because a child is born with his or her mother's antibodies which can remain in the child's body until about 12-15 months of age. Hence, during the first 15 months of life, an antibody test cannot show a difference between maternal antibodies and those produced by the baby. It is only possible to tell whether or not a baby is infected once his or her own immune system takes over and the maternal antibody is gone.

Other diagnostic methods 
These methods look for the presence of the virus itself rather than the body's reaction to it. Virus culture from blood or body fluid or PCR can detect whether or not an infant is infected with HIV in most cases by the age of about three months. 

But these methods are expensive, require sophisticated facilities and expertise, and are not usually available in developing countries.



    


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   Section 3: Diagnosis, treatment and care

3.2 Treatment and care

Key Points 
 
bulletGood care and treatment improves the quality of life for children with HIV.
bulletProviding supportive care at home may be less expensive for the family and more familiar and happier for the child.
bulletProviding regular, nutritious food helps the child grow and fight off infections.
bulletChildren with HIV are not sick all the time and should lead as normal a life as possible.


 


Most HIV-related illness in children is caused by common infections that can be prevented and cared for at home or treated at a health centre. Early recognition and treatment of common illnesses can also prevent the development of more serious infections, reducing hospital admissions and demand on health services. This section therefore focuses on: 
  

bulletprevention, treatment and supportive care at home 
bulletmanagement of common infections at primary care level 
bulletreferral of more serious illnesses and children who fail to respond to standard treatment. 

Good care and treatment can improve the quality of life and life expectancy for children with HIV. Most early deaths are preventable with good management. But in many settings, health services are unable to provide the ongoing care that children with HIV and AIDS need at health facilities.


Some countries have adopted a 'continuum of care' approach. This covers a range of services including counselling and testing, clinical treatment, and community - and home-based care. Care is provided at different levels and at different times according to need. The key to improving quality of life for children with HIV is early entry into the continuum of care. 

In Zambia for example, a number of different 'entry points' are used to ensure that those who need care are identified, including blood transfusion services, traditional healers, NGOs, counselling and testing facilities, and community-based home care programmes. Care is provided at different levels, according to severity of illness, and whether the child can be looked after at home or needs to be admitted. Steps are taken to make sure that proper care can be provided after discharge from a health facility. 

 

Basic care and support needs for all children - with and without HIV 
  

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Nutrition - safe weaning and nutritious food

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Care -  consistent parenting, security and love

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Recreation - something and someone to play with

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Education - parents and caregivers need information about looking after children when they are ill

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Prevention of illness - immunisation, good hygiene and a safe environment

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Appropriate management of illness - treatment of supportive care for common infections.



    


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   Section 3: Diagnosis, treatment and care

 

Prevention, treatment and supportive care at home 
 

Caring for children with HIV at home has several advantages: 
  

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good basic care can be given at home 

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sick children are usually happier at home in a familiar environment and surrounded by their family and friends 

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it is usually less expensive for families to care for a sick child at home, with fewer hospital bills and transport costs

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carers can more easily meet other family responsibilities.


No family will have a health worker with them all the time to help with the care of a sick child. Families are important members of the health team and health workers need to teach them about HIV and home care.


Families need to know how HIV is transmitted and not transmitted, what they can do to prevent transmission of HIV and other infections and to keep their child well, how to recognise and take care of common illnesses, and when a child is more seriously ill and needs to be taken to a health facility.

As a health worker, think about who needs to know about home care and what they need to know. Talk to them about caring for the child at home. Find out what they already know. Let them ask questions and answer their questions. Check that they understand what to do and that they have the time and resources to care for the child. Help them to identify other people who can help them and provide support. 

Some projects have provided simple home kits - which include, for example, items such as soap, bleach, vaseline and ORS packets - to help families to care for children with HIV and AIDS.
 
Preventing transmission of HIV at home 
There is very little risk that carers will acquire HIV from looking after a child with HIV or AIDS, provided that they follow certain simple rules. 

These include minimising contact with blood and body fluids, being careful with sharp instruments and covering open cuts and wounds. Bed linen and clothing soiled with faeces or blood should be washed carefully with hot water and soap and handled as little as possible.
 
Helping children to stay well 
The following are some of the most important things that parents can do to prevent illness and help their children to stay well, whether or not a child has HIV infection.
 
Hygiene 
  

bulletMake sure the home is clean. 
bulletPrepare food and drink, including formula, hygienically with boiled water and clean utensils.
bulletWash hands with soap (or ashes) before preparing and giving food to the child, after using the toilet and after changing soiled bedding or clothes, and before giving medicines. 
bulletTeach young children to wash their hands frequently, especially after using the toilet and before eating. 
bulletKeep the child away from animal and human faeces, and keep areas where children playas clean as possible. 
bulletBrush the child's teeth until he or she can do it.
bulletWash the Child's bed linen, towels and clothes with hot water and soap. Keep separate from other household laundry if blood or faeces are on them, avoid touching blood or faeces by rinsing off first and then wash items in hot soapy water and dry in the sun. Wash hands after handling soiled articles.
bulletAvoid spitting (this spreads TB) or spit into a container. 
bulletCover your mouth when coughing or sneezing. 
bulletDispose of waste, in a pit latrine or by burying or burning.



    


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Health care 
  

bulletLook out for symptoms of illness, especially cough, fever, fast or difficult breathing, loss of appetite or poor weight gain, diarrhoea, and vomiting, and treat these or seek treatment as soon as possible.
bulletMake sure the child is immunised (but not with live vaccines if he or she has symptomatic HIV, see page 37). 
bulletAvoid common infections, for example by keeping a child away from others who have pneumonia, tuberculosis and measles. Young children should not, if possible, sleep in the same room as an adult suspected of having TB disease.
bulletParents can help protect a child against malaria by making sure he or she sleeps under a bednet, preferably one impregnated with insecticide, by using coils and repellents to keep mosquitoes out of the home, and by draining pools of water that may be mosquito breeding areas. 
bulletCheck the mouth for sores and thrush and treat these promptly.


Nutrition and general care 
  

bulletGive regular nutritious food to help the child grow and fight off infections.
bulletMake sure the child gets enough sleep and rest.
bulletTreat the child like other children. Children with HIV are not sick all the time and should lead as normal a life as possible, including playing with other children.

 
Nutrition and children with HIV and AIDS 
 

Regular nutritious food helps the child grow and fight infections.

Children with HIV often lose weight or fail to thrive and grow. Repeated episodes of diarrhoea and other infections often result in loss of appetite and further weight loss. Special efforts are needed to make sure that they do not become severely malnourished.

Malnourished children are more vulnerable to infection and the problem is made worse in those with HIV who are already at greater risk of infection. 

It is therefore very important that children with HIV eat a good diet, to help them resist and fight off infections. They particularly need to get enough vitamin A in their diet because it helps to protect against diarrhoea and respiratory infections. 


A good diet includes:
 
Energy-rich foods such as maize, rice, millet porridge, bread, cassava, plantain or yam. These provide the main part of the meal and most of the energy. Sugar, animal fats, coconuts, nuts and vegetable oil are a concentrated source of energy.

Body-building foods such as meat, chicken, fish, eggs, dairy produce, nuts and beans. These foods contain protein and micronutrients such as iron, zinc, calcium and some vitamins.

Vitamin-rich foods such as dark green leafy vegetables and orange and yellow fruits. 

Family foods can be made more nutritious and easy to eat. For example, porridge can be made more energy-rich by adding vegetable oil or nuts or adding mashed pulses, vegetables, milk, fruit juice or coconut milk. Fermenting or malting can make foods such as porridge more nutritious and easier to swallow. 
 
Feeding and illness 
Children who are sick often lose their appetite. They need to be encouraged to eat small meals more frequently than usual, made with foods they like. Giving lemon juice in warm water or ginger drink can help reduce nausea. Unsweetened yoghurt and fermented foods like sour porridge are good for candida (oral thrush). 

Children with diarrhoea should be given well cooked local staples that can be easily digested in a soft mashed form and with added energy. Rice, barley, bananas and sweet potatoes are good staples. Foods rich in potassium, such as spinach, bananas, coconut water, avocado, should be given to replace potassium losses during diarrhoea. Refined, canned or junk foods should be avoided because they are less nutritious. Steaming or stir are good cooking methods because they do not remove as much of the nutrients from food as other methods. Spicy or fatty foods should also be avoided as these can worsen nausea. 

After illness it is important that children eat more to help them recover and build up their strength. A simple rule is to give an extra meal a day until the child has reached the same weight as before the illness.



    


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Safe preparation of food 
 

Clean food preparation and storage can reduce the risk of infections.

Clean food preparation and storage can reduce the risk of infections, especially diarrhoea.

Food should be cooked until it is thoroughly heated and bubbles. Cooked food should not be stored for more than 24 hours and any food that has been kept for more than two hours should be thoroughly reheated. Food and water should be stored in clean covered containers. 

Boiled and cooled water should be used to wash fruits and vegetables, and for cooking and drinking. 

Wash hands with soap and water before preparing and cooking food or feeding a child.

 
 
Taking care of common conditions 

Fever 
  

bulletA child has fever if he or she has a high body temperature (above 37.5C). 
bulletRemove unnecessary clothing and blankets.
bulletPut the child in the fresh air, preferably where there is a breeze.
bulletMake sure the child drinks plenty of fluids because fever can make him or her dehydrated. 
bulletIf the child has high fever (more than 38.5C), give paracetamol to reduce the fever. 
bulletThe child should be taken to a health centre if the fever continues for more than three
bulletdays. If the child also has a cough and is losing weight, has a stiff neck, severe pain or sudden diarrhoea or convulsions, or there is malaria in the area, he or she should be brought sooner.

 
Diarrhoea 

  

bulletA child has diarrhoea if he or she passes more than three loose stools in a day. 
bulletDiarrhoea can cause dehydration because of the loss of fluids and body salts.
bulletDehydration is dangerous in infants and small children. 
bulletTreating diarrhoea at home involves three important actions:
  - giving the child more fluids to drink than usual, 
  - continuing to feed the child, and 
  - seeking care when needed.
bulletParents should bring the child to a health centre if there is blood in the stools, if after three days there are still many watery stools, if the child vomits repeatedly, eats or drinks poorly, has fever, or is very thirsty. 
bulletAdditional fluids should be safe and include, as well as plain water, those which contain salt, such as ORS, salted soup, such as carrot soup, salted rice water.
bulletOther good home drinks for children with diarrhoea are green coconut water, yoghurt drinks, unsweetened tea, unsweetened fresh fruit juice, and water in which a cereal such as rice has been cooked.
bulletMedicines are not necessary for most children with diarrhoea.

 

How to give oral rehydration salts (ORS) solution 
  

bulletA cup is the best method because it allows the fluid to be given in small steady amounts which reduces vomiting. About one teaspoon every two or three minutes is a useful guide.
bulletOlder children can drink on their own from a cup.
bulletPlastic droppers are more difficult to keep clean and free of germs.
bulletCarers need to be patient and persistent when giving ORS. If a child refuses to take any more fluid after a time, it usually means that he or she has had enough.
bulletA child under two years needs about 50-100mI (between a quarter and half a cup) of fluid after each loose stool.
bulletOlder children require about 100-200ml (half to one cup) of fluid after each loose stool. 



    


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Skin problems 
  

bulletSkin problems include rashes, itching, painful sores and abscesses.
bulletCleaning the skin with soap and water and keeping it dry between washing can prevent most common skin problems. Salty water can be used as a disinfectant.
bulletCarers should try to stop young children from scratching if possible as this can cause infection. Keeping the nails short and clean helps. Carers can also try putting gloves over the child's hands. The irritation and itching can be reduced by cooling the skin with water or by fanning it,
bulletby applying calamine lotion and by not letting the child get too hot. 
bulletIf the skin is very dry, washing with soap and water can make it worse. Oils or creams, such as vaseline, glycerine or vegetable or plant oil (for example, coconut oil) can be used instead. 
bulletAvoid perfumed oils, soap and lotion as these may irritate the skin.
bulletChildren in nappies and those with diarrhoea need careful skin care. To prevent sores and rashes, leave the baby's bottom exposed to the air as much as possible, wash the baby's bottom between nappy changes with warm water, and use a barrier cream such as zinc and castor oil. Leaving the baby in wet nappies or cloths causes rashes and sores.
bulletPotassium permanganate solution makes a good antiseptic for soaking infected sores. Add a pinch of crystals to a litre of clean water.


Shingles 
  

bulletShingles begins as a painful rash with blisters and healing takes several weeks. 
bulletApply calamine lotion twice a day to relieve pain and itching, and promote healing.
bulletKeep sores dry and relieve pain with paracetamol. 
bulletBathe in salt water or apply gentian violet to prevent infection.


Bed sores 
  

bulletChildren may get sores if they are very weak and stay in bed a lot of the time.
bulletThe sores form on bony parts of the body. 
bulletCarers should try to encourage children to get out of bed or move them around and change their position if they cannot crawl or walk.
bulletSoft bed sheets or padding that are well aired can help to prevent sores, as can making sure the bedding is not wrinkled.
bulletBedding should be changed after it has been soiled with urine or faeces.

 

How to make gentian violet solution 

To make a 0.5% solution 
  

  1. Put one level 5ml spoonful (approximately 5g) of gentian violet crystals into one litre of clean water.

  2. Stir well and leave to settle. 

  3. Filter the solution through material or gauze, or carefully pour the solution into another bottle, to remove any particles of undissolved gentian violet crystals. If left in the solution, they may cause skin irritation.


To make 0.25% solution 
Mix equal parts of 0.5% gentian violet solution and water. For example, mix 50ml gentian violet solution with 50ml water. 

Note: Do not keep gentian violet solution for longer than seven days.

 

Mouth and throat problems 
  

bulletMouth and throat problems in babies with HIV are usually caused by thrush (white patches) or herpes (painful blisters on the lips ). 
bulletA sore mouth or throat problem can prevent a baby from eating and drinking properly, as well as making him or her irritable and feverish. 
bulletCarers can help reduce the problem by rinsing the baby's mouth out with salt water (half a teaspoon of salt in a cupful of clean water) after eating and between meals. If the child is old enough, encourage him or her to swish the salty water around the mouth and to spit it out. If not, use a clean cloth or cotton wick soaked in salt water. If possible, clean the mouth at least four times a day. 
bulletLiquids such as soups, fruit juices and yoghurt are good when a child has a sore mouth. Liquids can be taken more easily with a straw.
bulletCold foods and drinks may relieve discomfort. Spicy or salty foods and citrus fruits like oranges should be avoided as these can irritate sores. 
bulletSoft foods are easier for babies to chew and swallow if they have a sore mouth or throat.
bulletIf the baby has thrush, the tongue and inside of the mouth should be gently brushed with a soft toothbrush several times a day, and rinsed with salty water.
bulletApplying 0.25% gentian violet solution (see box) three or four times a day can help treat thrush and herpes blisters.



    


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Giving medicines to children 
  

bullet

Liquid medicines can be squirted slowly into the side of the child's mouth using a dropper or syringe or poured from a spoon

bullet

Always praise the child after he or she has taken the medicine.

bullet

If the medicine tastes bad, tell the child in advance.

bullet

If a pill cannot be swallowed, crush it and mix it with the smallest possible amount of milk or food or sugar. Do not hide medicines in food or the child may start to refuse to eat.

bullet

If the child vomits immediately after taking the medicine, give the dose again. If vomiting happens more than 20 minutes after taking the medicine there is no need to give the dose again.

 

Respiratory problems 
  

bulletA blocked nose can interfere with a child's eating and drinking. 
bulletCarers should clear the nose if it is congested. Dry or sticky mucus can be softened and removed using a cotton cloth wick moistened in clean salt water. 
bulletChildren with respiratory illnesses can get dehydrated. They should be given more to drink than usual. This will also help their cough and soothe a sore throat.
bulletParents should bring the child to a health centre immediately if he or she shows signs of difficulty in breathing, wheezing, breathes faster than usual, or cannot drink because of breathing problems. 
bulletSitting up a child or raising his or her head on pillows can help a child with a constant cough or breathing problems.


Pain control 
  

bulletCarers can help to relieve pain in young children with paracetamol (which is safer for children than aspirin).
bulletGive babies aged less than six months, one eighth of a tablet (62mg) two or three times a day (or every eight hours ). 
bulletGive children aged six months to two years a quarter of a tablet (125mg) two or three times a day.
bulletChildren aged three to seven years should be given half a tablet (250mg) two or three times a day.

 
Management of common infections at primary care level 

Pneumonia 
The most common causes of pneumonia in children with HIV are the same as in those without HIV. Diagnosis and management is therefore the same: signs of fast breathing, cough and chest indrawing are used for diagnosis; treatment uses standard out-patient antibiotics. 

However, recurrent pneumonia is more common in children with HIV, pneumonias may be more severe and bacteraemia is more common in these children. 

Children with severe pneumonia or very severe disease, should be given a first dose of antibiotic before urgent referral to hospital. Children who fail to respond to standard treatment or who have cough for more than 30 days should also be referred. HIV-infected children are also more likely to have PCP for which prolonged, higher dose cotrimoxazole treatment is required (four times a day, double the normal dose). However, this treatment decision will usually be made at the hospital to which a child is referred. 

Oral thrush and herpes zoster 
Oral thrush (candidiasis) or herpes zoster should be treated with half strength (0.5%) gentian violet for 3-4 days. The mother or other carer should be advised to return for follow up. 

If the condition is improving, continue with gentian violet treatment until it is better. If oral thrush has not improved: 
  

bulletapply miconazole gel to affected areas at least 3 times daily for 5 days OR
bulletgive 1ml nystatin suspension (100,000 IU/ml) 4 times daily for 7 days, pouring slowly into the comer of the mouth so that it reaches the affected parts.


The presence of pus may indicate a secondary bacterial infection. Apply tetracycline or chloramphenicol ointments. If there is a foul smell in the mouth, use metronidazole suspension (<3 years old: 50mg 3 times a day; older children: 100mg 3 times a day). 

Nystatin is a more expensive drug and its use should be limited to treatment failures with gentian violet. 

If the child has problems swallowing or cries when swallowing, has repeated vomiting, or has problems feeding, refer to hospital for alternative treatment.



    


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Tuberculosis 

Recurrent pneumonia is more common in children with HIV.


HIV infection increases a child's susceptibility to tuberculosis (TB) infection and is an important cause of progression of TB infection to TB disease. The case fatality rate associated with TB is higher in HIV-infected children. This is partly due to TB itself and partly due to other HIV-related problems. In areas where HIV infection is prevalent, it is important to consider whether or not a child has TB. The possibility of tuberculosis, pulmonary and extra-pulmonary, should always be considered in a child with HIV.

The diagnosis of TB in children with HIV is difficult. Early in HIV infection, when immunity is good, the signs of TB are similar to those in a child without HIV infection. But, in some children with HIV and TB, the symptoms of TB may be different, for example fever without cough or swollen glands in the neck. 

If HIV is more advanced, TB can spread to other parts of the body and progress to serious disease more rapidly. Disseminated disease, tuberculous meningitis and enlargement of the lymph nodes are more common in children with HIV. 

A child with cough for more than one month, recurrent fever, poor weight gain or weight loss should be suspected to have TB and treated. Children with HIV infection who have tuberculosis will usually respond to standard TB treatment. 

Standard TB treatment is based on an initial intensive phase where two or three drugs are given daily for two months, followed by a continuation phase for four or six months. Health workers should follow national TB treatment policy guidelines. 

To cure TB it is essential that the right dosage is taken regularly under supervision for the whole of the treatment period. Health workers need to follow up carefully to ensure that children are being given TB treatment correctly. 

NOTE: Children with HIV should NEVER be treated for TB with thiacetazone because this drug can cause severe and sometimes fatal side effects in patients with HIV. Thiacetazone is associated with a high risk of severe, and sometimes fatal, skin reactions in HIV -infected children. These reactions can start with itching skin but progress to more severe reactions where the skin peels off. For this reason, in areas where HIV infection is common, the best treatment regimens are those based on rifampicin, isoniazid and pyrazinamide. 

It is also important to check the TB status of the child's parents. Studies have shown that TB is transmitted from TB-infected parents to children, and children with HIV are particularly at risk.

Persistent or bloody diarrhoea 
Persistent diarrhoea (diarrhoea which goes on for more than 14 days) is more common in children with HIV. The most important treatment for all children with persistent diarrhoea is oral rehydration therapy and proper nutritional management including a modified diet and giving extra vitamins and supplements. 

Nutritional management can include temporarily replacing animal milk with fermented milk products such as yoghurt or replacing half the milk with complementary foods. In some places where lactose intolerance is not considered to be a problem, such as Zimbabwe, cow's milk is not replaced. 

If the diarrhoea continues or the child is severely dehydrated, he or she should be referred to hospital.

Bloody diarrhoea is usually caused by shigella and health workers should treat with a drug that is effective against shigella, according to local guidelines. Referral to hospital is required if there is no improvement after two days of treatment for bloody diarrhoea.



    


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Malnutrition 
Malnutrition is one of the most important causes of illness and death in young children with HIV and AIDS. Repeated infections, especially diarrhoea, worsen a child's nutritional status. It is very important that mothers are given practical advice about feeding, including during and after illness, to prevent malnutrition. Although nutritious food is the best source of vitamins and minerals, an HIV-positive child with poor nutrition may benefit from being given vitamin and mineral supplements. Tablets are best for children. Injections are painful, expensive, rarely necessary and can cause abscesses.

Measles 
Measles can be more severe in children with HIV. Children with HIV infection who get measles are more likely to die than children without HIV. 

All children should receive measles immunisation. It is especially important that infants with HIV are vaccinated against measles.


Fever 
Children with HIV who have fever (feels hot, fever reported by the mother or axillary temperature above 37.5C) should be checked for malaria and measles and treated if required. They should also be checked to see if they have serious bacterial infection and treated with antibiotics as necessary. 

A single dose of paracetamol should be given to children with high fever (axillary temperature of 38.5C or above, rectal temperature 39C or above).

Malaria 
Children with HIV who have simple malaria can be treated as out-patients in the same way as children without HIV. Children who have severe and complicated (cerebral) malaria should be referred as medical emergencies.

Otitis media 
Chronic ear infections are more common in children with HIV, but management of acute and chronic otitis media is the same in all children regardless of HIV status. However, children with HIV need to be monitored carefully because they are at greater risk of developing mastoiditis and may need to be referred for hospital treatment. 

Pneumocystic carinii pneumonia 
High dose cotrimoxazole (trimethoprim (TMP) 20 mg/kg/day, sulphamethoxazole (SMX) 100 mg/kg/day in four divided daily dosage, IV if possible or orally) should be initiated promptly and continued for 21 days. If therapy cannot be completed due to severe drug reactions, pentamidine, where available, can be given as a substitute (4mg/kg/day by IV infusion for 21 days). 

Oesophageal candidiasis 
Give ketoconazole (3-6 mg/kg/day) for 7 days except if the child has active liver disease. Amphotericin B (0.5mg/kg/day by IV infusion for 10-14 days) should be considered in cases of:
  

bulletlack of response to oral therapy
bulletinability to tolerate medications
bulletrisk of disseminated candidiasis (for example, a child with leucopenia - a low level of white blood cells).


Lymphoid interstitial pneumonitis 
Treatment should be initiated only if there are signs of severe hypoxaemia (dyspnoea, fast breathing, cyanosis, finger clubbing) and it is possible to complete full treatment. Treatment is with corticosteroid (prednisone 1-2 mg/kg/day) orally. The dosage and duration of treatment is dependent on the clinical response confirmed by x-ray. As treatment may last a long time, close monitoring for side effects of the steroid is important. Note that steroids are immunosuppressants and may increase the risk of TB and opportunistic infections in HIV - positive children. The likely benefits of treatment must be weighed against these potential adverse effects. Other causes of interstitial pneumonia should be ruled out before starting corticosteroid treatment because of the potential adverse consequences of this treatment in immunocompromised children.

 

Clinical follow-up 
 
Health workers should ensure that the following issues are monitored during regular clinic visits for children with HIV or those suspected to have HIV: 
  

bullet

Clinical condition

bullet

immunisation

bullet

growth and nutrition

bullet

psychosocial support.

    


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Referral and treatment 
 

Children may need to be referred if there has been a poor response to the usual treatment.

Children may require referral for: HIV testing with pre-and post-test counselling, if these are not available at the first level; to another centre or hospital for further investigation if there has been poor response to the usual treatment; or to a community or home care programme for counselling and further support. 

In most settings, it should be possible to treat common infections in children with HIV at the primary care level. Referral decisions will depend on the availability of referral level care and treatment for children with symptomatic HIV infection and AIDS. 



Children who should be referred include those who are: 
  

bulletnot responding to treatment (treatment failures) 
bulletsuffering from recurrent serious infections
bulletsick and under the age of two months. 


Children who do not respond to standard treatment may have opportunistic infections such as PCP or cytomegalovirus. Very young infants who are sick are very vulnerable and need to be given special care in hospital. 

The reason for referral should always be discussed with the mother or caretaker. The referral note should be clear and comprehensive while maintaining confidentiality. 

For more information about diagnosis, management and referral of more severe illness refer to the WHO guidelines on Integrated Management of Childhood Illness. 

 

Immunisation: protecting against common childhood infections 
 

Children with HIV and AIDS are vulnerable to childhood infectious diseases and need the protection provided by immunisation. 

Follow standard immunisation schedules for children with HIV with these exceptions: do not give BCG vaccine or yellow fever vaccine to HIV-positive children who are symptomatic.

Children who have, or are suspected to have, HIV infection but are not symptomatic should be given all vaccines, including BCG and yellow fever. 

All children with HIV and AIDS should therefore receive OPT (diphtheria, pertussis, tetanus), measles and polio (killed polio) vaccines. This applies even if they are sick.

Children with HIV disease or symptoms of AIDS should not be given BCG vaccine because BCG vaccine has very occasionally caused complications or disseminated BCG disease (illness caused by the vaccine itself) in children with severe immunodeficiency. Yellow fever vaccine is also contraindicated in children who have symptomatic HIV infection or AIDS because there is a risk of severe reaction.

However, in most countries, BCG vaccine is given soon after birth, before any symptoms of HIV or AIDS appear. Where this is standard practice, all infants should receive BCG vaccine because it helps to reduce the more severe complications of tuberculosis meningitis and disseminated disease in childhood.

Children with HIV seem to be more vulnerable to death from measles before the age of nine months (the time when measles immunisation is usually given). If health workers know that the infant has HIV infection, they could consider giving a dose of measles vaccine at six months of age as well as at nine months. However, this should only be done if it is consistent with national immunisation policy.

In countries where other vaccines such as Haemophilus influenzae type b or pneumococcal vaccine are included in routine childhood immunisation schedules, these vaccines should be given regardless of the HIV status of the child. Hepatitis B vaccine can also be given to all children regardless of their HIV status.
 

Immunisation of infants and children with HIV and AIDS 
 

Vaccine

Asymptomatic  

Symptomatic

BCG

Yes

No

DPT

Yes

Yes

OPV

Yes

Yes

Measles

Yes

Yes

IPV

Yes

Yes

Yellow fever  

Yes

No



    


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Palliative care in terminal HIV/AIDS 
If a child gets very sick with AIDS when little can be done to enable him or her to live longer, the decision to stop trying to prolong life must be made by the parents or other carers. After this, terminal or palliative care (alleviating symptoms but not trying to treat the underlying condition) is given. 

Every health worker needs to be prepared to deal with a child with terminal HIV/AIDS. The decision to give palliative care should only be made if: 
  

bulletthe child has a progressively worsening illness; and 
bulleteverything possible has been done to treat the presenting illness.

 
Palliative care means helping the dying child to be as comfortable as possible, even where resources are limited. One important decision to be made is where the child will die, for example at home, or in a health facility. If at home, health workers need to provide carers with support, advice and appropriate drugs. Health workers can also help to mobilise support from the family and community to reduce pressures on the immediate carers. 

Even when the prognosis for a child is poor, pain control and relief of distressing conditions, such as oesophageal candidiasis or convulsions, can significantly improve the quality of a child's remaining life. An HIV-infected child is often uncomfortable in the terminal stages of life due to a number of conditions, described below. Good palliative care is essential in these circumstances.

 

Drugs for treatment of children with HIV and AIDS 
 

Antiretrovirals 
In richer countries, HIV-positive children are treated with antiretroviral drugs. These drugs seem to improve quality of life but it is not clear whether they prolong life.

But, as explained earlier, antiretroviral drugs are very expensive. One side effect is anaemia which means that patients need frequent blood transfusions. Patients given antiretrovirals also need to be carefully monitored.

Prophylactic treatment 
Prophylactic treatment with cotrimoxazole (TMP 1 Omgikg/day, SMX 50mgikg/day in 2 daily dosages for 3 days a week) has been shown to reduce the incidence of PCP and bacterial infection in HIV-positive children. WHO recommends cotrimoxazole as the drug of choice for prophylaxis of children with recurrent serious infections, because it is sensitive to many bacteria and protozoa, is low cost and widely available. However, the availability of drugs, the costs of prophylaxis and the possibility of development of cotrimoxazole resistance also need to be considered. In addition, the most severe cases tend to develop in infants aged less than six months when it is difficult to know their HIV status. This makes decisions about when to start prophylaxis difficult. Prophylactic treatment in children with HIV infection for PCP must be consistent with national treatment policies and guidelines.

Basic drugs 
In many countries, even basic drugs for treatment of common infections in children, including first and second line antibiotics, are not available. Making these available - and drugs for treating tuberculosis and antifungal drugs for thrush - must be the first priority for health services. In addition, more efforts must be focused on ensuring that drugs required when standard treatment fails and palliative drugs for end of life care are accessible where they are needed.


    


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Pain control 
The management of pain in HIV-positive children follows the same principles as other chronic diseases (such as cancer or sickle cell disease). Attention must be paid to ensure that care for pain is culturally appropriate and sensitive. 

In children with HIV/AIDS, pain may be related to the disease itself, associated infections or procedures used in diagnosis and treatment. Painkillers should be given before the pain gets very bad and regularly while it lasts. The following drugs can be used in the effective management of pain in the terminal stages of illness. 
  

bulletLocal anaesthetics - should always be used for painful procedures, skin lesions or mucositis. Lidocaine, an injectable local anaesthetic works in 2-5 minutes. TAC (tetracaine, adrenaline, cocaine) can be placed on a gauze pad and placed over open wounds.
bulletNon-opioids - appropriate for mild and moderate pain. Paracetamol 10-15 mg/kg orally 4-6 times daily. Aspirin can be used as an alternative to paracetamol in terminal stages of illness. 
bulletOpioids - appropriate for moderate and severe pain not responding to treatment

with paracetamol or aspirin. Children need to be monitored carefully for side effects, which are common, the risk of respiratory depression, and the possibility of tolerance and dependence. In infants under six months of age, the initial opioid dose should be a quarter of the dose given to older children. Doses should also be reduced for children with severe malnutrition, liver and kidney problems and multi-organ system failure.
 

bulletMorphine is well studied, inexpensive and is a strong opioid. It may be used orally
(0.2-0.5mg/kg/dose every 4-6 hours), IV (0.05-0.1mg/kg/dose every 4-6 hours) or by continuous infusion (0.005-0.01mg/kg/hr).
bulletCodeine - combined with non-opioids to give additional pain relief 
(0.5-1mg/kg/dose every 6-12 hours).


Anorexia, nausea and vomiting 
There are no easy solutions to loss of appetite in terminal illness. Caregivers should be encouraged to continue giving the child regular meals. Nasogastric feeding may be necessary and, if appropriate, caregivers should be shown how to do this. Oral or N rehydration may be necessary, as may the use of anti-emetics such as metoclopramide (1-2 mg/kg/dose every 2-4 hours) in very distressing nausea and vomiting. 

Pressure sores 
Caregivers should be shown how to turn the child at least once every two hours. If pressure sores develop they should be kept clean and dry. Local anaesthetics such as TAC can be used to relieve pain.

Care of the mouth 
Caregivers should be taught how to clean the mouth after every meal. If mouth ulcers develop, clean the mouth at least four times a day using clean water or salt solution and a clean cloth rolled into a wick. Apply 0.25% gentian violet to the sores. Give paracetamol if the child is feverish, irritable or in pain. If the child is bottle-fed, recommend that a cup be used instead.

Airway management 
Airway management is particularly important when the child is unconscious. In these cases, the child ideally should be in a hospital or hospice where trained staff can manage the airway. Where the parents wish to have the child dying at home, it will be necessary to train them to nurse an unconscious child and to keep the airway clear. A manual suction device can be used and parents taught how to use it. Many terminal patients develop respiratory distress as they near death.



    


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3.3 Affected children

Key Points 
  

bullet

It is often better for children who have lost one or both parents because of AIDS to remain in their own community and be cared for by other family or community members.

bullet

Helping families and communities cope with young children who are affected by HIV and AIDS is a key role for health workers.


Children who are not infected with HIV may be affected by HIV and AIDS. Those who have lost their mother, father or both parents have to deal with loss and grief, face stigma and discrimination, and their physical and emotional health may be affected. 

It is better in most cases for children to stay in their own community. There have always been orphans in all societies and it is important to investigate locally how a culture responds to orphans. Children may be looked after by grandparents, older siblings, aunts or other relatives.

But in many places, the additional responsibility of taking care of children affected by HIV and AIDS is placing great strain on the extended family and on community resources. Families that are already poor or who have lost income from wages or agriculture because of the death or illness of wage earners are finding it difficult to cope with looking after additional children. Those that have already spent money on treatment and funeral expenses for the parents may be reluctant to take care of children who are left. Toddlers and babies may also be considered to be a burden because they need more care and cannot contribute to family income. 

An older brother who is looking after his younger siblings describes what happened to them: 'my aunts and paternal grandmother refused to take care of us. The matter was reported to the police who assessed the situation and gave custody of the children to me.' 

Households headed by older children are especially vulnerable. Their problems include: 
  

bulletpoverty 
bulletlack of supervision and care 
bulletstunting and hunger 
bulleteducational failure 
bulletlack of adequate medical care
bulletpsychological problems 
bulletdisruption of normal childhood and adolescence 
bulletexploitation 
bulletearly marriage 
bulletdiscrimination
bulletpoor housing 
bulletchild labour.  


Young children looked after by other caregivers, such as grandparents or older siblings may have worse health and nutrition. This is because substitute caregivers may:
 

Households headed by older children are especially vulnerable.

bullethave less knowledge about how to manage childhood illness, about good nutrition or about immunisation 
bullethave less knowledge than mothers about recognition of illness in sick children. Older siblings, aunts or grandparents who are looking after a large number of young children may be unable to pay for food or travel to clinics, or may have insufficient time to care for young children when they are sick 
bulletassume that children whose parents have died are themselves infected with HIV. Because of this, they may be denied health care by health workers, or families may be reluctant to spend time and money on treatment when they are sick.

 


Children who have lost a parent or both parents may be confused and unhappy if they have moved away from their home to live with relatives they do not know well and are separated from their brothers and sisters. A lack of love and care can affect children psychologically. Although children whose parents have died because of AIDS are often described as 'innocent victims', they may be neglected, rejected or stigmatised by others in the community or by those who are now looking after them. These children need emotional and psychological support, and those caring for them need support to enable them to deal with their needs.



    


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What can health workers do? 

Identifying the main caregivers and community coping mechanisms is an important first step.


Health workers in some countries are increasingly having to deal with infants and children with no mother who are cared for by grandparents or older siblings. Health workers need to make sure that these children receive health care for common illnesses in the same way as other children and that they are immunised, and to monitor their nutritional status carefully. 

It is important to ensure that grandparents and children who are themselves caring for young children receive education and information about primary health care. 

Health and community workers can also ensure that caregivers are provided with information about managing illness and about nutrition that is relevant to their circumstances. They can help caregivers to identify their needs in terms of material and emotional support and help them to obtain assistance. 

Practical support from the community or from community care programmes should also be considered to help children affected by AIDS. These children must not be singled out and support should be directed towards families and communities, especially child-headed households.

Working with communities takes time and longer term support is better than intensive short term 'relief. It is also better to support existing community coping mechanisms. This means finding out what people are already doing and what structures, such as churches and schools, are already there, rather than introducing new initiatives from outside which may not be sustainable. 

The first step is to identify who the main caregivers are and what infrastructure is available to provide support. Ways to help families and communities to cope could include:
  

bulletproviding counselling services to counsel the family or caregivers, psychological, spiritual and social support 
bulletproviding economic support, or encouraging support from the extended family and other community members 
bulletencouraging greater involvement of men in the care of young children
bulletmobilising community groups, churches, religious, political and traditional leaders
bulletarranging for temporary support and care for families during particularly difficult times, for example when a child (or a parent) is very sick 
bulletidentifying referral and social services 
bulletsupporting measures to reduce stigma and discrimination 
bullettraining community volunteers in counselling skills so that they can support families 
bulletregular visits to support home-based care and to monitor how well families are coping. 


Strategies and coping mechanisms for child-headed households in particular could include: 
  

bullettemporary or permanent fostering 
bulletrelocation to an adult relative's family
bulletadult relative moves in with children 
bulletregular supervisory and support visits from family or community members
bulletmaterial support from relatives 
bulletassistance with care of younger siblings.


Community leaders as well as community and health workers can play an important role in encouraging relatives to fulfil family responsibilities, and in protecting the rights of widows and children to land and inheritance. As one home care volunteer in Zimbabwe noted: 'The late husband's family take everything, but sometimes the community elders intervene'. 

Health and community workers can counteract stigma and rejection, by making sure that people understand how HIV is and is not transmitted. The FOCUS visiting programme, described in the box on the following page, not only contributed to the welfare of children but encouraged a more human attitude towards orphans. 
 

Child rights and HIV and AIDS 
HIV is a child rights issue. 

Although, under the UN Convention on the Rights of the Child, all children have the right to health care, education, social services, protection from discrimination, exploitation and abuse, and to survival and development, children with HIV or affected by AIDS are often denied these. 

In most countries, young children who are orphaned have few legal or customary rights to family property or land. Few children have any say in what happens to them. Consideration needs to be given to children's rights in relation to inheritance and to deciding on their future.



    


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Community-based support programme 
 
In Uganda 
In Luwero District, one in five children under the age of 18 years has lost at least one parent. The most important needs are for school fees, food, bedding, clothing, and medical care.

Practical support for orphans and their carers, through AMREF and the Francois-Xavier Bagnoud Association, has included assistance to guardians with developing income-generating activities and support to schools to enable children to attend without paying fees.

In Zimbabwe 
The Families, Orphans and Children Under Stress (FOCUS) programme in Mutare, Zimbabwe, is supported by the Family AIDS Caring Trust. The programme supports community-based orphan initiatives in four rural sites in Manicaland, through volunteers from local churches. In most cases the volunteers are women, many of them widows, who are provided with basic training so that they can identify and register orphans in the community.

Orphans in need of assistance are identified, regular visits are made, and material support is provided to enable children to stay in their homes and communities. In the last six months of 1996, the 88 volunteers made nearly 10,000 visits to over 3,000 orphans in 798 families. The most needy are visited the most regularly.

Practical help provided by volunteers has included helping children to rebuild their homes, food, blankets, and primary school fees. Projects have been started in all four sites to encourage self-reliance.

An important aspect has been identifying ways to support orphans that complement existing coping mechanisms, enabling them to be supported within their own communities. Also crucial has been encouraging the more important members of communities to be involved in helping affected families. This has in turn encouraged other members of the community to provide support and has been an important strategy for reducing stigma and community rejection. One family, with an older sister looking after several younger siblings, had been ignored by the community - 'we had no visitors because we are so poor we have nothing to give them' - until community leaders became involved in helping to repair the house. The family now receives support from neighbours.

Another project, the Elim Hospital Community-Based Orphan Support Programme, involved men as volunteers in home care and orphan support to share the burden with women.

Lessons learned from these programmes include: 
  

bullet

the importance of involving all members of the community 

bullet

only community-based organisations can implement these programmes

bullet

the community and the catchment area where the programme will operate needs to be defined

bullet

programmes are more likely to succeed if they are based on and develop pre-existing activities

bullet

volunteers are the most important resource and care is needed in selecting, training, supporting and motivating them

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steps in client identification include defining the target group, enumeration, registration and needs assessment.


Problems associated with such programmes include: 
 

bullet

stigma attached to AIDS, so that it remains largely hidden

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the needs of children are often not prioritised because children rarely have a voice

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policy makers often still prioritise resource allocation to institutional responses rather than

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community-based responses.



    


Caring with confidence    44   Page 45   46  top of page

   Section 3: Diagnosis, treatment and care

 

Strategies for dealing with children orphaned by HIV and AIDS 
 
The following is a summary of the three approaches that have been most commonly used to support children orphaned by HIV/AIDS:
 
1. institutional 
2. reactive 
3. community-based.

1. Institutional 
There are various types of institutional orphanages. These often provide high quality care in terms of material needs such as food or clothing. But they have limited capacity, are often expensive to run and do not meet other needs of children, such as belonging to a community. The institutional approach is generally not recommended because it is too costly and therefore unsustainable, and is generally seen as a temporary and last resort.

2. Reactive 
Various organisations have reacted to orphans coming to them by providing for their basic needs. Again this approach mostly addresses physical needs. It may also not reach the most needy and encourages dependency.

3. Community-based 
With this approach, community-based volunteers identify the most needy children within the community and visit them regularly. Material assistance, where it is provided, is channelled through the volunteers. Emphasis is placed on support to encourage self-reliance rather than dependence on ongoing external inputs.

The orphan policy developed by the Department of Social Welfare in Zimbabwe, clearly encourages community-based care as the best and most cost-effective method of caring for orphans, as the following (adapted from the draft Zimbabwean National Orphans Care Policy) illustrates.

Places for provision of child care (in descending order of preference):

1. immediate family 
2. extended family 
3. community support to elderly and adolescent headed households

4. foster care, adoption 
5. village-type institutions 
6. dormitory-type institutions.


Source: G Foster, FACT.



    

 

 
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