The findings of this research are similar to findings from studies in other countries that documented poor communication between healthcare providers and women receiving HIV testing as part of their antenatal care; and stigma and discrimination if they were found HIV positive [24–28]. Several studies in other parts of India have also suggested that healthcare providers may not frequently be obtaining informed consent, counseling women before or after testing, or keeping test results confidential [29–31]. In this study, informed consent was nonexistent among private practitioners and communication around HIV testing was at best prescriptive, and at worst coercive and threatening. In addition, women reported that their human rights were frequently violated through breaches of confidentiality, with HIV test results frequently being given to family members without consent. Perhaps most disturbing of all, an HIV diagnosis almost always resulted in what appeared to be a denial of services under the guise of referring the patient to a government hospital or ART Center.
From a human rights perspective, only the experiences of two of 14 participants in this study would meet the minimum standards prescribed by the WHO and the Government of India [7, 11]. In other words, these were the only participants reporting that they had received all of the 5 c’s: Informed Consent, Confidentiality, Counseling, Correct Result, and Connection to care. Other participants reported a HIV testing process that was seriously flawed either because the minimum standards for testing were not observed, or there were breaches of confidentiality, stigma, or discrimination in the settings they attended for antenatal care. This study found that the human rights of most participants were violated in multiple ways primarily in private hospitals, laboratories and clinics. Often, tests were carried out without explanation or informed consent. HIV counseling was rare or nonexistent, and results were often delivered without any explanation of their significance. Women often learned of their HIV status with other family members within hearing distance, and sometimes even received the diagnosis after others were told. On the whole, participants in our sample appeared much more satisfied with the services offered in public hospitals, particularly in the light of their previous encounters with private for-profit facilities.
The findings of this study are of particular concern in India since 93% of all hospitals, 64% of all hospital beds, 80-85% of doctors, 80% of outpatients and 57% of in-patients are in the private sector . While it is impossible to generalize the results of a qualitative study, the accounts of women from two large Indian states, Karnataka and Maharashtra, should give cause for concern among policymakers and healthcare providers. While violation of human rights is worthy of consideration on its own merits, the import of these issues to HIV prevention efforts should not be underestimated. There is ample evidence that fear of HIV stigma that results from a lack of confidentiality can have a profound impact on the ability and willingness of people to access and utilize HIV prevention services . Although it was clear from most of the interviews that public facilities appear to be providing HIV counseling and testing in antenatal care that meets the WHO criteria, those women tested in government facilities represent only a small fraction of the total pregnancies each year. For PMTCT coverage to reach the Government of India’s vision of eliminating new HIV infections among children, policymakers in India will have to find ways to improve the quality of services offered in the private for-profit sector.
The qualitative methodology utilized in this study has both strengths and weaknesses. While the purposive sampling methods and small sample size make it impossible to generalize the findings, there are compelling reasons for using these methods in this type of research. As Peter Byrne has observed, “stigma is in the eye of the beholder” so it is important for women to describe their own highly contextualized experiences and perceptions about stigma and discrimination during HIV testing in pregnancy . As Miriam has suggested, such research is useful for “understanding how people interpret their experiences, how they construct their worlds, and what meaning they attribute to their experiences” .