Africa Health July 2012

HIV Care

Children and HIV care needs Understanding the range of symptoms experienced by children living with HIV is vital in designing quality care services. Veronica Tembo, Faith Mwangi-Powell, and Jane Nakawesi assess best practice options

In Africa, HIV is a key cause of morbidity and mortal- ity in children.1

According to the UNAIDS, 390000

children were newly infected with HIV in 2010, 30% fewer compared with the epidemic peak of 560000 in 2002 and 2003. While this is good news, children in low- and middle-income countries lag far behind adults in accessing ART; in 2010, 51% of eligible adults were on treatment versus 23% of eligible children.2,3 Even with treatment, children infected with HIV

face many challenges. They often develop at a slower rate than healthy children and as they grow older, they may also need physical therapy and speech therapy to keep up with other children.4

Children with HIV also

need opportunities for play, stimulation, and education to ensure that they keep up with the key development milestones. In short, children with HIV need to be treated and allowed to behave as normal children. In reality, this can be difficult as many children with HIV have lost one or both parents and in some instances are taking care of extremely ill parents.5

Indeed there are

more than 16million children under the age of 18 who have lost one or both parents to AIDS across Africa.4 Many children with HIV may have to deal with troubling symptoms during the course of their illness. Therefore early management of symptoms and early initiation of ART is vital otherwise children are vulner- able to death as a result of overwhelming HIV infection when their immune systems are immature. Studies have shown that in about 20% of children who acquire HIV from their mothers, the disease can progress rapidly and lead to serious illness before age 1, with many in this group dying by age 4.5

Providing pre-ART supportive

care and symptom management with effective physi- cal and palliative support can ensure that children live almost normal lives.6 Apart from the overwhelming symptoms, pain is also a common and undertreated problem for children with HIV. Such pain includes: (i) Abdominal pain caused by the infections of the gut. This pain may be constant or intermittent, dull or sharp. The child may have more pain after eating or when the stomach is empty. There may be diar- rhoea or vomiting with the pain. Sometimes it is so severe the child stops eating and loses weight.

(ii) Headache; this is linked to stress and tension of poor vision caused by the HIV infection or by op- portunistic infections.

(iii) Ear pain due to infection.

Veronica Tembo, Nurse Trainer at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF); Dr Faith Mwangi-Powell, Executive Director of the African Palliative Care Association; and Dr Jane Nakawesi, Academic Programme Manager, Mildmay, Uganda.

30 Africa Health

(iv) Mouth/throat pain, predominately associated with candidiasis or herpes zoster.

(v) Pain of the arms and legs due to muscle and joint pain or neuropathy.

(vi) When the HIV causes inflammation in the brain, some children get spasms that cause pain. (vii) Undefined pain is ‘all over the body’ pain where some children with HIV say they feel pain ‘all over’.They cannot say exactly where it hurts, just that they hurt. Usually these children are very sick with HIV.7.8.

Caregivers and doctors are therefore

encouraged to regularly ask children whether they are in pain and take their answers seriously. Another issue that complicates care for HIV children is the need for adults to take the responsibility of telling the child about their illness. As recently reported in the Journal of Hospice and Palliative Nursing, pretending the child isn’t sick is not helpful to the child and indeed the child needs to know when they are facing a serious dis- ease as this may help them appreciate the importance of taking medication, and make them understand their symptoms.9

As they grow older, they need to become

more involved in their care and may voice a prefer- ence for involvement in decision making regarding their condition and management.

Although early identification and modern medications

have helped prevent the frequency and intensity of symp- toms that children with HIV face, their more vulnerable immune systems mean that children who are HIV positive also experience the usual childhood infections such as colds and flu more frequently and severely than other children and may require hospitalisation. In addition, HIV medications can cause side-effects such as skin rashes, brittle bones, lipodystrophy, and high blood sugar.8 Greater understanding of the impact of HIV on chil- dren is important in the design and evaluation of pro- grammes to support children living in difficult circum- stances. Children are the most defenceless of vulnerable populations. Providing HIV care and support, including palliative care, to such children is crucial, as this ad- dresses their physical, emotional, social, and cognitive needs as they grow from children to adults.

References 1. National Institutes of Allergy and Infectious Disease. HIV infections in infants and children. 2004. Centers for Disease Control and Prevention. Basic statistics. HIV/ AIDS 2010.

2. World Health Organization. Paediatric HIV and treatment of children living with HIV. http://www.who.int/hiv/topics/paediatric/en/index.html, accessed 13th June 2012.

3. Allen D and Sorensen EM. Children with HIV/AIDS: A vulnerable population with unique needs for palliative care. J Hospice Palliative Nursing 2008; 10: 359–67.

4. Read JS et al. Diagnosis of HIV-1 infection in children younger than 18 months in the United States. Pediatrics 2007; 120: 1547–62.

5. World Health Organization. Preferred antiretroviral medicines for treating and prevent- ing HIV infection in younger children. Geneva: World Health Organization, 2008.

6. O’Hara MJ, Czarniecki L. Pain management in children with HIV/AIDS. GMHC Treat Issues 1997; 11: 38–40.

7. Pain in Children With HIV/AIDS. National Pediatric and Family HIV Resource Center http://www.thebody.com/content/art5979.html accessed 13th June 2012.

8. Pain in Children With HIV/AIDS. National Pediatric and Family HIV Resource Center. http://www.thebody.com/content/art5979.html, accessed 13th June 2012.

July 2012

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