I want to be like the others - Waverley Care

I want to be like the othersThe ‘Listening to Children in Scotland’ study took research with affected children in anew direction, by setting out to talk to children themselves about their experiences ofliving with a parent or carer with HIV (Cree et al, 2002; Cree et al, 2004a, 2004b,2006; Kay et al, 2003; Tisdall et al, 2004; Wallace et al, 2006). This study had threeelements: a postal survey of health and social work agencies in Scotland; interviewswith 28 children and young people in Dundee, Edinburgh and Glasgow; and a postalsurvey of schools in the same cities. The study found little recognition from statutoryagencies of the needs of affected children, whether in health, education or socialwork; the small number of support services which existed at this time for affectedchildren were all provided by the voluntary sector (Tisdall et al, 2004). Theresearchers report considerable difficulty in accessing affected children in Scotland,because of the high levels of secrecy which surround HIV, for adults and childrenalike, and because they had taken a decision only to speak with children who werebelieved to know and understand about their parents’ HIV status. In the event, thechildren and young people who took part in the study were found to be carrying aheavy burden in terms of stigma, family disruption and loss. Their greatest wish wasto be seen as ‘normal’ children with ‘normal’ parents, but the lives which theydescribed were far from ‘normal’ for most children, largely because of the stigmaattached to HIV (Cree at al, 2004a). A picture emerges of several stages in parentalillness, some of which recur: ‘not really ill’ (with few chronic symptoms); chronicconditions; diagnostic operations; episodes of acute infection and illness; steady andsubstantial deterioration; and death (Cree et al, 2006). These stages each had animpact on children in different (and often unpredictable) ways, at home, at school andin the wider community. For example, many children had missed significant parts oftheir schooling, either through staying at home with a parent or through tiredness inclass. The focus on HIV prevention at school made them feel bad, reinforcing themessage that only ‘foolish’ people who indulged in ‘risky behaviour’ were at risk ofinfection (Wallace et al, 2006). Only a few children felt able to talk to their parentsabout their fears or ask questions about the illness, and extended family memberscould find it too painful to discuss, even though they provided practical or emotionalsupport to the parent (Kay et al, 2004). Most children had been told to keep HIV a‘family secret’. This meant that when they did manage to share their concerns with afriend, they risked being ostracised by their peers, and punished by their parent(Cree et al, 2006). The theme of stigma is picked up again in a recent research studyon African American adolescents affected by HIV in the United States (Mason et al,2009). This study reports that ‘stigma by association’ is a common experience foradolescents whose mothers have HIV. It is argued that interventions should1515