Experiences of breastfeeding and vulnerability among a group of HIV-positive women in Durban, South Africa.

While international guidelines are currently being drawn up about HIV and infant feeding practices, and national and regional guidelines are under discussion in South Africa, there have been remarkably few studies that have sought to elicit HIV-positive mothers' experiences of breastfeeding and of paediatric infection. There is an urgent need to document this 'grass roots' knowledge in different sites, and for this data to be used to inform policy development, and for advocacy and counselling purposes. This qualitative investigation reports on the experiences and decisions taken around breastfeeding by a peer support group of 13 HIV-positive mothers meeting at King Edward VIII Hospital, Durban. In this study, the particular focus of information-giving and decision-making as to breast or formula feed is concerned with the impact on individual HIV-positive women and their babies. The most significant finding is that at no stage during their pregnancy were any of these mothers given information about the risks of HIV transmission through breastmilk. The study data were elicited in an in-depth group discussion, and individual women were invited to re-enact their stories in a follow-up discussion for clarification purposes. The women also discussed how they dealt with problems surrounding confidentiality in cases where few have been able to disclose their status to the extended family. There have been renewed calls for further investment in counsellors, with an enhanced role for community activists as peer educators. While there are severe resource constraints and low morale among many overworked nurses, one of the general problems in hospital settings remains the vertical health paradigm. This does not accommodate women's experiences, preferences, social networks and lay knowledge, and inhibits many women from becoming full participants in decisions affecting their own and their family's health.