Children and families

Since 2000, only 1.2% of UK pregnancies where the mother has diagnosed HIV have resulted in HIV transmission (and fewer when medical recommendations are followed). Three quarters of HIV-positive pregnant women are black African.¹ Nonetheless, since 1995, a total of 1566 infants and children have been diagnosed with HIV in the UK, of whom 1254 (80%) were black African.² In many of these cases, the child was born overseas.

HIV can put tremendous strain on families due to stigma and discrimination, issues around disclosure, the fact that it can be passed on, the ongoing nature of the infection and additional caring responsibilities. Children may be stigmatised or bullied at school or elsewhere when other children are aware of there being HIV in the family.

Mothers whose children have acquired HIV may experience intense guilt for infecting their child, especially when their child experiences illness. One African woman interviewed by researchers said: “The worst days is when my boy is sick, ‘cos I blame myself. I know it’s my fault.” As noted in the section on women, parents may have left children behind in Africa when they moved to the UK, and this can be distressing for all concerned. Although parenting can bring many burdens for HIV-positive African women, children are often described as a source of inspiration to continue ‘fighting’ the disease.³

It is unclear whether difficulties around disclosing HIV status to children (either the child’s status or the parent’s) vary between ethnicities. However, it has been suggested that traditional relationships within African families can make the task of disclosure more complex.⁴ In contrast, survey data show that HIV-positive black African people are more likely to have disclosed their status to children or siblings than other ethnic groups.⁵

For migrant families, worries over immigration status and being able to access health care and other support, as well as the fear of discrimination and exclusion, are likely to compound the emotional pressure on families caused by HIV.⁶

Although the problem of late diagnosis among black African adults has received much attention, there has been less focus on undiagnosed children. There have been a number of cases in which infants who acquired HIV from their mother have survived through childhood and adolescence without the infection being diagnosed. There is no reliable estimate of how many undiagnosed children there are in the UK. Children born abroad, particularly in sub-Saharan Africa, are most at risk of having undiagnosed HIV infection as they are less likely to have benefited from antenatal testing and treatment. Whereas the majority of HIV-positive children born in the UK are likely to be diagnosed under the age of one, those born abroad are more likely to be diagnosed at five years or older, with many being diagnosed only after having reached ten years of age.⁷

Improving detection rates among adults would go some way to reducing the number of undiagnosed children. It is believed that 70 to 120 undiagnosed women gave birth in 2007, with about 30% of their children likely to be infected. Most of these women declined to be tested during pregnancy. It is estimated that three-in-five infected infants born to undiagnosed women will die, compared with one-in-five whose mothers have been diagnosed.⁸

Since 2008, attention has been given to the need for HIV clinics in the UK to ensure that the children of parents with diagnosed HIV are tested themselves. In an audit of a GUM clinic in a district general hospital, just 58 out of 217 under-16s born to 297 HIV-positive women had been tested for HIV. Of the 118 children living in the UK, the infection status of 42% was known; of children living abroad (mostly in southern Africa), mothers knew the infection status of just 9% of their children. Parents may not see the need to test, may assume that a child who has had no visible health problems is HIV-negative, may be worried about the impact of a positive diagnosis, may feel guilty about the possibility of having infected the child or may be worried that the testing process will lead the child to understand that the parent has HIV.⁹

If parents are reluctant to allow their child to be tested, the parents’ right to confidentiality and their usual right to make decisions about their child’s medical treatment will have to be balanced with the child’s welfare and safety. If all attempts to work with the family to find acceptable ways to have the child tested fail, and the case reaches court, the court will consider this as a child protection issue, with the child’s safety being paramount.⁸

Young people over the age of 16 are normally considered mature enough to make their own decisions about medical care. Moreover, young people under the age of 16 may consent to medical testing and treatment on their own behalf if a doctor believes they have sufficient understanding and maturity to do so. This is known as ‘Gillick competence’.¹⁰