I want to be like the others - Waverley Care

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55I want to be like the others2. Scoping Study2.1 IntroductionThe purpose of the scoping study was to find out what information was already in thepublic domain about children and young people infected and affected by HIV. Thefocus was on recent literature and policy papers, for two main reasons, scholarly andpragmatic. Firstly, it was recognised that the context of HIV had changed, and somuch of the previous body of research and knowledge may have had little relevanceto today’s situation. Secondly, with a short timescale and limited budget, it wasagreed that a more extended review of literature was not feasible.The scoping study will begin by examining research evidence in relation to childreninfected with HIV, before going on to explore what is known about affected childrenand young people. It will focus on recent UK studies which have been identified ashaving particular interest for this topic, but it will also mention, where thought to bepertinent, key studies from the United States. Research on the experiences ofinfected and affected children in the developing world has not been included in thisliterature review except where the research is part of a cross-national study. This isbecause the issues facing children and young people in countries without routineaccess to medical and health care (where infant mortality is high and life expectationlow) are too different to be able to provide sufficient comparable evidence for a needsanalysis of children with HIV in Scotland. 32.2 MethodSearches of electronic citation and journal databases were undertaken, using the keywords ‘children’, HIV’ and ‘UK’, and covering the period from 1999 to 2009. Adeliberate decision was made to examine both health and social science sources,hence the following databases were searched: ASSIA, Cochrane Library, CumulativeIndex to Nursing and Allied Health Literature (Cinahl Plus), Ingenta, InternationalBibliography of Social Sciences, JSTOR, Sociological Abstracts, Social ServiceAbstracts, Web of Knowledge. All potentially useful papers were read and theirreferences were examined for other relevant papers. These were then followed upusing the same criteria as above, and, where necessary, this led to further articles3 This view is supported by Wigersma, Singh and van der Boom (1998). See also Schafer(2005) writing more recently about children and uneven globality.
66I want to be like the othersand papers. In addition, a web search was undertaken using Google and GoogleScholar, throwing up a wider selection of ‘grey’ literature (including unpublishedpapers, government and voluntary agency reports, newspaper articles etc.) Theformal search strategy was supported by a targeted examination of policy andstatistical data identified by members of the Steering Group, and by following upspecific suggestions made by informants over the process of the study.The searches revealed a surprising scarcity of current research in the UK on childrenand HIV, most specifically on children affected by HIV. The focus of attention inresearch, policy and practice has been fairly consistently on those who are infectedwith the virus: gay men, intravenous drug-using adults, children with HIV, and, morerecently, heterosexual adults. This conclusion is supported by the findings of asystematic review reported in the Cochrane Library in 2009 which states that therehave been no studies of interventions for improving the psycho-social well-being ofchildren affected by HIV. ‘Available knowledge’, the authors assert, ‘consists of“lessons learned”, child psychological theory and other related research in the adultpopulation’ (King et al, 2009). This is not to suggest, however, that there has been noresearch on children and HIV in the UK. On the contrary, a considerable body ofresearch has explored epidemiological and psychological factors in relation tochildren infected with HIV. There is also extensive ‘grey’ literature which providesadditional information as well as the views of practitioners and those working in thefield. Most of the knowledge about affected children arises, as we will demonstrate,from a number of illuminative, though relatively small-scale, research projects whichhave explored the views and experiences of parents and children who are affectedby parental HIV.2.3 Children infected with HIV2.3.1 Evidence from research and literatureOne of the primary sources of knowledge on children infected with HIV for over 20years has been the European Collaborative Study (ECS). This prospective cohortstudy began in 1987 with the objective of exploring issues relating to HIV infection inpregnancy and childhood across Europe. In its early years, the study was primarilyconcerned with tracing the impact of HIV infection on children, and sharing good
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