Psychosocial issues and support for children who acquired HIV/AIDS from their mothers in Trinidad and Tobago

The HIV/AIDS prevalence rate in the Caribbean is second only to Sub-Saharan Africa and higher than the global rate. HIV/AIDS presents a real threat to children as they account for one in six global AIDS-related deaths and one in seven new global HIV infections. Furthermore, the number of new cases of children in the region is growing. Despite the impact of HIV/AIDS on Caribbean children, few research studies have been undertaken on the psychosocial issues that affect them and studies that include children’s perspectives seem to be even more lacking. This thesis is based on original research carried out in the Republic of Trinidad and Tobago. This study has examined the psychosocial issues that exist for children living with HIV in Trinidad and Tobago and has explored, from the perspectives of both children and their mothers, the types of supports that are available or accessed. The aims of the research were to 1) examine the psychosocial issues that affect children with acquired HIV/AIDS in Trinidad (the children in this research acquired HIV from their mothers) and 2) to explore the support that exists and gaps that may be necessary for their improved quality of life. It is hoped that intervention strategies will be gleaned from this research to assist future interdisciplinary teams that interact with this population. The methodology was based on a grounded theory approach (Strauss & Corbin 1990), and consisted of theoretical sampling and constant comparison throughout data analysis (open, axial, and selective coding) using a case triad (triad refers here to perspectives of three different actors). Four cases were purposively selected, each ‘case’ comprising a mother who was HIV positive, an “HIV Friend” (primary support figure, 4 in total) identified by the mother, and a child living with HIV (there were two children in one family, making five children in total, aged between five and thirteen years) – each of whom was interviewed. In addition, three mothers who did not tell their children of their status were also interviewed. These additional interviews were the result of theoretical sampling to explore two themes that emerged as significant in the first stage of analysis: 1) How “secrecy” was manifested in the lives of families coping with HIV and 2) The role of mothering. In total sixteen persons were interviewed. The findings produced three core categories, namely 1) the cyclical and complex nature of secrecy as a strategy to protect children from stigma and discrimination, 2) the impact on children of living with HIV-AIDS, including their role as protectors of HIV-positive mothers and 3) Mothering with HIV-AIDS. The study showed that these families, though impacted by uncertainty about the future, fear of dying and societal rejection, and for the large part financially and materially disadvantaged, were in-tact and functioned well. Furthermore these families had created a ‘new normal’ in which the secrecy about HIV was central and around which a range of behaviours, social codes and perceived consequences for breaches (of the secret) shaped relationships in both explicit and implicit ways. This indicates a high level of resourcefulness and resilience on the part of the women and their children. However the pressure to maintain the secret created additional challenges for women and children already impacted by a high level of stress because of HIV. Additionally, the rules of secrecy meant that women were unable to talk about their circumstances or needs and consequently had very little support either for themselves or their children. From the child’s point of view, the secret required them to be conscious of what they said and to whom and although not able to talk about HIV, paradoxically the secret had the effect of making HIV more dominant in their lives. This was despite the fact that children themselves did not seem to regard HIV as central in their everyday worlds. Mothering was also a significant theme to emerge from the study and it appeared that such was the importance of the role of mother, as a primary signifier of Caribbean womanhood, that the decision to have children was more important than the risk of passing on HIV. Two of the mothers had gone on to have more children even though their first child had been born with the virus. The study showed that being a good mother in a family affected by HIV means being able to protect children from the implications of the virus being known about outside the family and thus mothering was intertwined with the creation and maintenance of the secret. New understandings about the effects of HIV/AIDS on children and several recommendations aimed at improving services and resources for these children and their families have emerged from the study. Implementation of these recommendations would auger well for improved quality of life in the future, as children continue to live with the chronic illness of HIV/AIDS. The sample was small (16 participants in all) and as a qualitative study, no claims are made about with respect to any generalisations of the findings.