HIV testing among pregnant women living with HIV in India: are private healthcare providers routinely violating women’s human rights?

BMC International Health and Human Rights

Celia Fisher²  Sean Philpott⁴  Reshma Shaheen³  Neha Vaidya⁵  Sanjeevani Kulkarni⁵  Vinay Kulkarni⁵  Karl Krupp¹  Purnima Madhivanan³ 

[1] Health Promotion and Disease Prevention, Robert Stempel College of Public Health and Social Work, Florida International University, Miami, USA;Center for Ethics Education, Fordham University, Bronx, New York, USA;Public Health Research Institute of India, 89/B, 2nd Cross, 2nd Main, Yadavgiri, Mysore 560020, India;The Bioethics Program, Union Graduate College, New York, USA;Prayas, Amrita Clinic, Athawale Corner, Karve Road, Deccan Gymkhana, Pune 411 004, India

关键词: Perinatal transmission;    Qualitative research;    Diagnosis;    Confidentiality;    Antenatal care;    HIV testing;    India;   

Others  :  855021
DOI  :  10.1186/1472-698X-14-7

 received in 2013-10-04, accepted in 2014-03-20,  发布年份 2014

【 摘 要 】

Background

In India, approximately 49,000 women living with HIV become pregnant and deliver each year. While the government of India has made progress increasing the availability of prevention of mother-to-child transmission of HIV (PMTCT) services, only about one quarter of pregnant women received an HIV test in 2010, and about one-in-five that were found positive for HIV received interventions to prevent vertical transmission of HIV.

Methods

Between February 2012 to March 2013, 14 HIV-positive women who had recently delivered a baby were recruited from HIV positive women support groups, Government of India Integrated Counseling and Testing Centers, and nongovernmental organizations in Mysore and Pune, India. In-depth interviews were conducted to examine their general experiences with antenatal healthcare; specific experiences around HIV counseling and testing; and perceptions about their care and follow-up treatment. Data were analyzed thematically using the human rights framework for HIV testing adopted by the United Nations and India’s National AIDS Control Organization.

Results

While all of the HIV-positive women in the study received HIV and PMTCT services at a government hospital or antiretroviral therapy center, almost all reported attending a private clinic or hospital at some point in their pregnancy. According to the participants, HIV testing often occurred without consent; there was little privacy; breaches of confidentiality were commonplace; and denial of medical treatment occurred routinely. Among women living with HIV in this study, violations of their human rights occurred more commonly in private rather than public healthcare settings.

Conclusions

There is an urgent need for capacity building among private healthcare providers to improve standards of practice with regard to informed consent process, HIV testing, patient confidentiality, treatment, and referral of pregnant women living with HIV.

【 授权许可】

   
2014 Madhivanan et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]USAID: India HIV/AIDS health profile. Found at: http://www.integrainitiative.org/countries/india/ webcite 2009. Accessed 19 October 2013
• [2]UNICEF: India: PMTCT. http://www.unicef.org/aids/files/IndiaFactsheet_PMTCTFactsheet_2010.pdf webcite. 2010. Accessed 19 October 2013
• [3]UNGASS: Country progress report: India. 2010. http://www.unaids.org/en/dataanalysis/knowyourresponse/countryprogressreports/2010countries/india_2010_country_progress_report_en.pdf webcite
• [4]Mandal S, Bhattacharya RN, Chakraborty M, Pal PP, Roy SG, Mukherjee G: Evaluation of the prevention of parent to child transmission program in a rural tertiary care hospital of west bengal, India. Indian J Community Med 2010, 35(4):491-494.
• [5]World Health Organization, UNAIDS, UNICEF: Towards universal access: scaling up priority HIV/AIDS interventions in the health sector: progress report, April 2007. Found at: http://www.who.int/hiv/mediacentre/universal_access_progress_report_en.pdf webcite. Accessed 12 November 2013.
• [6]World Health Organization: Service delivery approaches to HIV testing and counselling (HTC): A strategic policy framework. Geneva, Switzerland: World Health Organization; 2012. Found at: http://www.who.int/hiv/pub/vct/htc_framework/en/ webcite Accessed 12 November 2013.
• [7]World Health Organization: Statement on HIV testing and counseling: WHO, UNAIDS re-affirm opposition to mandatory HIV testing. Found at: http://www.who.int/hiv/events/2012/world_aids_day/hiv_testing_counselling/en/ webcite. 2012. Accessed 12 November 2013
• [8]Joint United Nations Programme on HIV/AIDS/ World Health Organization/Open Society Institute: The role of human rights in ensuring universal access to HIV testing and counselling: report of a meeting sponsored by the World Health Organization, the Joint United Nations Programme on HIV/AIDS, and the Open Society Institute. 2010. Found at: http://www.hivpolicy.org/Library/HPP001816.pdf webcite. Accessed 12 November 2013
• [9]United Nations: Declaration of commitment on HIV/AIDS. Global Crisis-Global Action 2001. Found at: http://www.un.org/ga/aids/coverage/FinalDeclarationHIVAIDS webcite Accessed 12 November 2013
• [10]National AIDS Control Organization: Operational guidelines for integrated counseling and testing centres. 2007. http://naco.gov.in/upload/Policies%20%20Guidelines/20 webcite,%20Operational%20Guidelines%20for%20Integrated%20Counseling%20and%20Testing%20Centres.pdf Accessed 18 November 2013
• [11]Government of India Ministry of Health and Family Welfare & National AIDS Control Organization: Guidelines for HIV testing. 2007. Found at: http://naco.gov.in/upload/Policies%20%20Guidelines/5-GUILDELINES%20FOR%20HIV%20TESTING.pdf webcite Accessed 18 November 2013
• [12]Barr D, Amon JJ, Clayton M: Articulating a rights-based approach to HIV treatment and prevention interventions. Current HIV Re 2011, 9(6):396-404.
• [13]Obermeyer CM, Osborn M: The utilization of testing and counseling for HIV: a review of the social and behavioral evidence. Am J Public Health 2007, 97(10):1762-1774.
• [14]The World Bank: HIV/AIDS in India. 2012. Found at: http://www.worldbank.org/en/news/feature/2012/07/10/hiv-aids-india webcite Accessed 18 November 2013
• [15]Population census 2011. http://www.census2011.co.in/census/city/375-pune.html webcite
• [16]Richardson JTE (Ed): Handbook of qualitative research methods for psychology and the social sciences. Leicester: British Psychological Society, Wiley-Blackwell; 1996.
• [17]Brislin RW: Back-translation for cross-cultural research. J Cross-Cult Psychol 1970, 1(3):185-216.
• [18]Lacey A, Luff D: Qualitative Research Analysis. Sheffield: The University of Sheffield; 2009.
• [19]Coy JA: Autonomy-based informed consent: ethical implications for patient noncompliance. Phys Ther 1989, 69(10):826-833.
• [20]Jain D: Women, property rights and HIV in India. AIDS Sex Gend 2006, 3:9-10.
• [21]National AIDS Control Organization: NACP III. 2007. Found at: http://siteresources.worldbank.org/INTHIVAIDS/Resources/375798-1151090631807/2693180-1151090665111/2693181-1155742859198/India20V3.pdf webcite. Accessed 23 November 2013
• [22]Darak S, Panditrao M, Parchure R, Kulkarni V, Kulkarni S, Janssen F: Systematic review of public health research on prevention of mother-to-child transmission of HIV in India with focus on provision and utilization of cascade of PMTCT services. BMC Public Health 2012, 12:320. BioMed Central Full Text
• [23]United Nations: The Universal Declaration of Human Rights. Found at: http://www.un.org/en/documents/udhr/ webcite Accessed 23 November 2013
• [24]Painter TM, Diaby KL, Matia DM, Lin LS, Sibailly TS, Kouassi MK, Ekpini ER, Roels TH, Wiktor SZ: Women’s reasons for not participating in follow up visits before starting short course antiretroviral prophylaxis for prevention of mother to child transmission of HIV: qualitative interview study. BMJ 2004, 329(7465):543.
• [25]Chinkonde JR, Sundby J, Martinson F: The prevention of mother-to-child HIV transmission programme in Lilongwe, Malawi: why do so many women drop out. Reproductive Health Matters 2009, 17(33):143-151.
• [26]Kasenga F, Hurtig AK, Emmelin M: HIV-positive women’s experiences of a PMTCT programme in rural Malawi. Midwifery 2010, 26(1):27-37.
• [27]Theilgaard ZP, Katzenstein TL, Chiduo MG, Pahl C, Bygbjerg IC, Gerstoft J, Lemnge MM, Tersbol BP: Addressing the fear and consequences of stigmatization - a necessary step towards making HAART accessible to women in Tanzania: a qualitative study. AIDS Res Ther 2011, 8:28. BioMed Central Full Text
• [28]O’Gorman DA, Nyirenda LJ, Theobald SJ: Prevention of mother-to-child transmission of HIV infection: views and perceptions about swallowing nevirapine in rural Lilongwe, Malawi. BMC Public Health 2010, 10:354. BioMed Central Full Text
• [29]Datye V, Kielmann K, Sheikh K, Deshmukh D, Deshpande S, Porter J, Rangan S: Private practitioners’ communications with patients around HIV testing in Pune, India. Health Pol Plann 2006, 21(5):343-352.
• [30]Bharat S: A systematic review of HIV/AIDS-related stigma and discrimination in India: current understanding and future needs. SAHARA J 2011, 8(3):138-149.
• [31]Sheikh K, Rangan S, Kielmann K, Deshpande S, Datye V, Porter J: Private providers and HIV testing in Pune, India: challenges and opportunities. AIDS Care 2005, 17(6):757-766.
• [32]Goel N, Galhotra A, Swami H: Public private partnerships in the health sector. Internet J Health 2006, 6:2. http://ispub.com/IJH/6/2/13025 webcite
• [33]Thomas B, Nyamathi A, Swaminathan S: Impact of HIV/AIDS on mothers in southern India: a qualitative study. AIDS Behav 2009, 13(5):989-996.
• [34]Byrne P: Stigma of mental illness and ways of diminishing it. Adv Psychiatr Treat 2000, 6:65-72. doi: 10.1192/apt.1196.1191.1165
• [35]Merriam SB: Qualitative Research: A Guide to Design and Implementation. 3rd edition. San Francisco, CA: Jossey-Bass; 2009.