The complexity of consent: women's experiences testing for HIV at an antenatal clinic in Durban, South Africa

Abstract

Informed consent has historically been a cornerstone to ensuring autonomy during HIV testing. However, recent changes to global guidance on HIV testing have led to substantial debate on what policy provisions are necessary to ensure that consent remains meaningful in the context of testing. Despite disproportionate rates of testing during pregnancy, pregnant women's perspectives on the HIV testing process are underrepresented in the testing discourse. This study explores women's experiences with HIV testing and the consent process in a public antenatal clinic in South Africa. Qualitative interviews with 25 women were conducted at the clinic at either an antenatal visit or an infant immunization visit that followed HIV testing. Interviews were transcribed, translated, and coded for analysis. Women were categorized into one of the three groups based on their perceptions of choice in consenting for an HIV test. Matrices were used to allow for cross-category and cross-case comparison. Half of the women described having a clear choice in their decision to test. Others were less clear about their choice. Some women felt they had no choice in testing for HIV. None of the women stated that they were tested without having signed a consent form. We found that half of the women's narratives illustrated direct and indirect ways in which providers coerced them into taking an HIV test while receiving antenatal care. As the new guidance on HIV testing is implemented in different settings, it is critical to monitor women's testing experiences to ensure that a woman's right to make an informed, voluntary choice is not violated. Furthermore, models of testing that allow us to meet broader public health goals while simultaneously respecting women's autonomy are needed.

From caution to urgency: the evolution of HIV testing and counselling in Africa

“…37 In our review, evidence from four studies, the majority involving small groups of pregnant women, indicated that patients were not always aware they had the right to decline HTC in antenatal clinics, perhaps because of the power balance between patients and health-care providers. 29,31 However, studies in other regions suggest that women may find the routine offer of HTC acceptable because it "normalizes" the process of HTC. 38 Our review has several limitations.…”

“…Some studies that reported on the acceptability of PITC included only small samples of women and did not involve interviews with women who declined an offer of HTC. 28,31,32 In addition, the studies included in our review are subject to their own limitations: the majority were nonrandomized studies and the difficulty of reporting and synthesizing evidence from nonrandomized studies is well documented. 39 Moreover, studies were subject to acquiescence bias 40 and, as the questions posed to patients were different in each study, it was difficult to compare their findings.…”

“…24 In South Africa, 52% of pregnant women who had been tested for HIV felt they had made an informed choice and had a positive experience, whereas 28% felt that their choice had been "less clear" and 20% that their voluntariness had been compromised. 31 …”

“…Research HIV testing and counselling in Africa R Baggaley et al (i) 90.2% had a "good" or "very good" experience with or opinion of the health education talk, whereas 9.8% had a "fair", "bad" or "very bad" experience; (ii) 86.3% had a "good" or "very good" experience with or opinion of pretest counselling, whereas 13.7% had a "fair", "bad" or "very bad" experience; (iii) 95.1% had a "good" or "very good" experience with or opinion of post-test counselling, whereas 4.9% had a "fair", "bad" or "very bad" experience Groves, 2010 31 South Africa To evaluate women's experiences with HTC…”

Implementing routine provider-initiated HIV testing in public health care facilities in Kenya: a qualitative descriptive study of nurses' experiences

“…However, in Kenya (as elsewhere), considerable variation in testing uptake and return for follow up between different testing sites has been reported, indicating that specific site factors have an impact on the patient experience (Anand et al, 2009). A number of qualitative studies highlight that patients can feel pressured into testing, are mistrustful of healthcare staff or report poor quality care (Delva, Mutunga, Quaghebeur, & Temmerman, 2006;Groves, Maman, Msomi, Makhanya, & Moodley, 2010;Hamilton et al, 2008;Painter et al, 2004 (National AIDS and STD Control Programme, 2006). However, a recent evaluation of the PITC national training programme found that only 30% of health facilities were fully implementing PITC citing staff shortages, lack of space and low staff morale as associated factors (Kathambana et al, 2008).…”