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What is it like to grow up with HIV? Social science findings from the ARROW and BREATHER trials

09 July 2015

Earlier this week, researchers from the London School of Hygiene and Tropical Medicine (LSHTM) presented social science findings from the ARROW and BREATHER trials.  The researchers looked at the experiences of young people growing with HIV, asking them: what is it like to live with HIV?  How do your relationships with the people in your life affect your ability to manage your HIV treatment?

Researchers presented the findings at the Association for the Social Sciences and Humanities in HIV (ASSHH) Conference in Stellenbosch, South Africa. 

The researchers used a mixture of interviews, focus groups and diary activities to try to capture the young people's experiences of living with HIV.  This research formed a part of the larger ARROW and BREATHER clinical trials. 

From the ARROW trial, 104 children (aged 11-13), 40 carers and 20 healthcare workers from Uganda and Zimbabwe took part in the social science sub- study.

From BREATHER, 43 young people (aged 10-24 years) living in Uganda, the UK and USA were interviewed.  In Uganda, researchers also interviewed 15 carers of young people living with HIV.

Researchers looked at several aspects of the young peoples' experiences in detail.  These include:

Whether young people were taking their drugs regularly (adherence)

It is important that children and young people with HIV take their drugs regularly, otherwise they can become ill or develop resistance to the medication.  Although many of the young people interviewed did miss some of their doses, researchers found that this was rarely due to a lack of knowledge about their condition.

Many young people experience a silence and stigma around their condition - both within their households and in their wider social life - that makes it difficult for them to be seen taking pills.  They are often encouraged to keep their HIV status secret, so also have to cope with side-effects of the medication and the prospect of a life-time of daily pills in isolation from friends and even family members.

Researchers also found that that young people were often afraid to admit to family members or clinic staff that they had missed a dose.  Young people were afraid both of being told off and of upsetting positive relationships. 

Disclosure: "I have one question.  How did I get HIV?" (Martha, Uganda, 12 years old).

Most of the young people who took part in this research were infected before they were born, or as babies (perinatally-infected).  However, researchers found that many of the children and young people interviewed did not fully understand how they became infected with HIV: "I ask myself how the illness came about" (Daniel, 11, Uganda).  This was a significant (often unvoiced) concern for many children, causing them to worry about their past behaviour that could have 'caused' the infection, or what could have happened to them. 

The majority of the young people who knew how they had become infected with HIV were understanding of their parents, rather than angry.  John, 17, from the UK said: "To be honest, this actually brought me and my mum closer together because it's something that only the two of us share.  So I don't really feel any anger or resentment towards her."

Similarities and differences

Although the children and young people interviewed as part of the ARROW and BREATHER trials live in a variety of very different places and settings, researchers were surprised to find many similarities between their experiences. 

Common themes that came up in interviews were:

  • social difficulties in taking medication regularly
  • silence about having HIV, and encouragement to keep their HIV status a secret
  • isolation from friends and peers

These findings can be used to help carers, healthcare workers and clinics to provide children and young people with better support.