Hopes, fears, knowledge and misunderstandings: responses of HIV-positive mothers to early knowledge of the status of their baby.

Little is known about how HIV-positive mothers experience and react to knowing the HIV status of their baby as diagnosed by the polymerase chain reaction (PCR) test at 4-6 weeks. This qualitative study drew on interviews with 20 mothers of HIV-negative and 18 mothers of HIV-positive babies after receiving their baby's PCR results. Thematic analysis combined exploration of themes that appeared significant to the participants and those relevant to health care. Amongst the themes identified were the following: The period before getting the results involved active mental preparation and was emotionally stressful. Most women accepted the results, but some had doubts about their reliability. Mothers of HIV-negative babies were relieved, but mothers of HIV-positive babies were generally very distressed and expressed a sense of responsibility and guilt. Both groups of mothers had similar hopes for the future of their babies, but the timelines of mothers of HIV-positive babies tended to be shorter. Most women experienced significant levels of stress, but were able to call on support networks and use various individual coping mechanisms to manage their stress. Most women were formula feeding their babies, but regretted not being able to breastfeed. Many women had not planned their current baby and most did not intend to have more children, but many of the latter had not taken active steps to prevent further pregnancy. The findings provide pointers to shortcomings in health worker communication and suggest that more effective communication should take account of normative community views and be more closely attuned to the changing needs and experiences of HIV-positive mothers.