“Am iz kwiin” (I’m his queen): an exploration of mothers’ disclosure of maternal HIV to their children in Kingston, Jamaica: using feminist Interpretative Phenomenological Analysis (IPA) in a resource-constrained context

Introduction: World Health Organisation (WHO) policy presents parental HIV disclosure to children as beneficial and encourages parents to disclose. Most research on disclosure has been conducted in high income countries and tends to represent women’s choices in terms of a disclosure/non-disclosure binary which, I argue, is premised on rationalist theory models of decision making and disclosure which fail to contextualise women’s experiences, particularly those women who live in the Global South. This research study aimed to address gaps in existing research by exploring the maternal disclosure experiences of HIV positive Jamaican mothers to their seronegative children and offers a critique of existing WHO policy. Methods: I carried out in-depth interviews with 15 HIV positive Jamaican women with at least one seronegative child aged over 10 years, associated with one clinic and one NGO in Kingston, Jamaica. I adopted a feminist approach to Interpretative Phenomenological Analysis (IPA) and applied Hochschild’s concept of emotion work to make sense of women’s experiences. In attending to the structural factors shaping health actions, a feminist approach highlights the relationship between Jamaican contextual factors of poverty, violence and complex familial formations and women’s disclosure decisions. Conceptual resources drew on feminist critiques of dominant discourses of motherhood, including governmentality and responsibilisation, which, I argue, underpin policy imperatives on disclosure to children. Results: Mothers’ experiences of maternal disclosure to children occurred on a spectrum, rather than a disclosure/nondisclosure binary, and included: full disclosure, partial disclosure, nondisclosure, denial of HIV, differential disclosure (telling only some of their children) and disclosure by others. Experiences of disclosure were affected by financial risks and practical issues as well as consideration of children’s long-term physical and mental health, education prospects and the impact on other family relationships. Mothering at a distance (mothers living apart from their child/ren) and the fear or reality of ‘downfallment’ (a child being HIV positive) further complicated disclosure experiences. The women described strategies which challenged negative characterisations of HIV positive women in order to present themselves as capable mothers and manage their own and their children’s emotions. Conclusion: Disclosure of maternal HIV to children is a complex issue, carrying risks as well as benefits, which are particularly heightened in low income contexts. When women disclose this could be seen as a form of governmentality and when they don’t disclose their mothering is called into question within policy discourses predicated on evidence from the Anglo North. The over simplistic disclosure /non-disclosure binary fails to consider the emotion work women engage in to manage their illness and their mothering identity in the context of their relationships with their children. This research adds to the HIV disclosure literature from low and middle income countries and extends maternal HIV disclosure research through the use of a novel approach, feminist IPA, to understand women’s experiences. The research findings point to the need for a more nuanced policy on disclosure in low and middle income countries