Belton, Sara
(2014)
Exploring the psychosocial barriers to children’s HIV services in western Uganda: a case study of social representations.
PhD thesis, London School of Economics and Political Science.
Abstract
Despite the clinical need for children living with human immunodeficiency virus (HIV) to access and adhere to antiretroviral treatment (ART), rates globally remain roughly half that of adults. Although the structural barriers to accessing HIV and
health services are well studied, further research into the psychological and social factors underscoring children’s limited access to HIV care is needed to facilitate scale up amongst health service users and providers. Using a social representations theoretical approach, this thesis examines the interplay between psychological and social factors concerning children’s HIV service uptake in a community setting. A qualitative research study was conducted in Kabarole district,
Uganda with 60 adults, including 15 health care workers (HCWs) and 45 adult carers of children, and 82 children (N=142). Methods of data collection were individual interviews, focus groups, a draw-and-write exercise, and participant observation in the main local health clinic setting. A thematic content analysis reveals multiple cross-cutting factors which mediate HIV service usage.
For HCWs, despite challenging working conditions, the impact of ART has been positive both professionally and personally. Adult carers, however, continue to be negatively impacted by social stigma against HIV, and fears of potential negative consequences resulting from revealing an HIV-positive status influence their uptake of HIV services. For children, the pervasiveness of HIV in their society, and its negative personal and social impact, has created a sense of fatalism and resignation over potential HIV infection and future suffering. At present, the clinical practice environment does not provide a supportive space for these representations to be openly addressed by health service providers or users. Drawing from these findings, the thesis concludes that in order to increase children’s ART access and adherence, more supportive clinical and social environments will need to be jointly created by health service users and providers, through the building of social capital and increased social trust and cohesion between stakeholder groups. Failing to do so may result in continued low or even decreased HIV service usage for children, particularly in light of recent national legislation which may lead to further entrenchment of HIV stigma against socially vulnerable groups.
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