‘Scared of going there’ – barriers to HIV treatment for pregnant women in Tanzania

Stigma, facility constraints, and personal disbelief: why women disengage from HIV care during and after pregnancy in Morogoro region, Tanzania.

McMahon SA, Kennedy CE, Winch PJ, Kombe M, Killewo J, Kilewo C. AIDS Behav. 2016 Aug 17. [Epub ahead of print]

Millions of children are living with HIV in sub-Saharan Africa, and the primary mode of these childhood infections is mother-to-child transmission. While existing interventions can virtually eliminate such transmission, in low- and middle-income settings, only 63% of pregnant women living with HIV accessed medicines necessary to prevent transmission. In Tanzania, HIV prevalence among pregnant women is 3.2%. Understanding why HIV-positive women disengage from care during and after pregnancy can inform efforts to reduce the impact of HIV on mothers and young children. Informed by the tenets of Grounded Theory, we conducted qualitative interviews with 40 seropositive postpartum women who had disengaged from care to prevent mother-to-child transmission (PMTCT). Nearly all women described antiretroviral treatment (ART) as ultimately beneficial but effectively inaccessible given concerns related to stigma. Many women also described how their feelings of health and vitality coupled with concerns about side effects underscored a desire to forgo ART until they deemed it immediately necessary. Relatively fewer women described not knowing or forgetting that they needed to continue their treatment regimens. We present a theory of PMTCT disengagement outlining primary and ancillary barriers. This study is among the first to examine disengagement by interviewing women who had actually discontinued care. We urge that a combination of intervention approaches such as mother-to-mother support groups, electronic medical records with same-day tracing, task shifting, and mobile technology be adapted, implemented, and evaluated within the Tanzanian setting.

Abstract access   [1]

Editor’s notes: The push for universal access to antiretroviral therapy for everyone living with HIV faces many obstacles.  In many parts of the world, pregnant women are offered HIV testing as a part of antenatal care. Treatment is then offered if a woman is found to be HIV-positive. Many women accept this care, having been provided with the information that this is beneficial for their baby and also themselves. Some women who accept treatment take themselves out of care. This can be detrimental not only for the HIV status of their baby, but also for their general antenatal care. As the authors of this paper note, there is a growing body of literature that describes losses to care from the provider perspective. There are also a number of papers about women who have accepted care, who describe why others refuse treatment.  It is unusual to find detailed findings from interviews with women who have dropped out of or refused HIV treatment while pregnant. While the findings are not particularly surprising, the authors of this paper have captured the individual reasons why the 40 women interviewed in their study, left or never entered care. The reasons given underline the challenge of ‘prompt treatment’. Many women were not ready for immediate treatment.  Fears of the clinic layout ‘betraying’ a woman’s status are described. So too are the negative attitudes of health providers as well as family and community members. The authors provide an excellent example of how good qualitative research, conducted and analysed in an exemplary manner, offers valuable insights. This paper provides valuable information on an often hidden minority of women who are not ready or able ‘to test and treat’.

Africa [11]
United Republic of Tanzania [12]
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