Examining the Health Care Experiences of Women Living with Human Immunodeficiency Virus (HIV) and Perceived HIV-Related Stigma



      The increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women's health service experiences at a local outpatient clinic.


      A qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma.


      Women perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient–provider relationships, resulting in women's disengagement from health care.


      We propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV.
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        • Ahmed S.M.
        Overcoming barriers to effective community based participatory research in US medical schools.
        Education for Health: Change in Learning and Practice. 2004; 17: 141-151
        • Baxter P.
        • Jack S.
        Qualitative case study methodology: study design and implementation for novice researchers.
        The Qualitative Report. 2008; 13 (Retrieved from Accessed March 15, 2010): 544-559
        • Bayoumi A.M.
        • Degani N.
        • Remis R.R.
        • Walmsley S.L.
        • Millson P.
        • Loutfy M.
        • Bierman A.S.
        • et al.
        Chapter 11: HIV Infection.
        in: Bierman A. Project for an Ontario Women's Health Evidence-based Report (POWER Study). Published by St. Michael's Hospital and ICES. 2010 (Retrieved from Accessed July 15, 2013.)
        • Bradley-Springer L.
        • Stevens L.
        • Webb A.
        Every nurse is an HIV nurse.
        The American Journal of Nursing. 2010; 110: 32-39
        • Braun V.
        • Clark V.
        Using thematic analysis in psychology.
        Qualitative Research in Psychology. 2006; 3: 77-101
        • Browne A.J.
        • Smye V.L.
        • Varcoe C.
        Postcolonial theoretical perspectives and Aboriginal health research.
        Canadian Journal of Nursing Research. 2005; 37: 16-37
        • Buka S.L.
        Disparities in health status and substance use: Ethnicity and socioeconomic factors.
        Public Health Reports. 2002; 117: S118-S125
      1. Canadian Research Institute for the Advancement of Women (CRIAW) (2002). Women's experience of racism: How race and gender interact. Retrieved from Accessed September 15, 2014.

        • Carter A.J.
        • Bougeois S.
        • O’Brien N.
        • Abelsohn K.
        • Tharao W.
        • Greene S.
        • Loutfy M.
        • et al.
        Women-specific HIV/AIDS services: Identifying and defining the components of holistic service delivery for women living with HIV/AIDS.
        Journal of the International AIDS Society. 2013; 16: 1-13
      2. CATIE. (2014). “You may have come into contact with…”: HIV Contact Tracing in Canada. Retrieved from Accessed March 9, 2015.

        • Cohen J.
        • Ezer T.
        Human rights in patient care: A theoretical and practical framework.
        Health and Human Rights. 2013; 15: 7-19
        • David P.
        • Lindy K.
        • Ingrid B.
        Attitudes of nursing students towards caring for people with HIV/AIDS: Thematic literature review.
        Journal of Advanced Nursing. 2009; 65: 2262-2273
        • Drainoni M.-L.
        • Dekker D.
        • Lee-Hood E.
        • Boehmer U.
        • Relf M.
        HIV medical care provider practices for reducing HIV sexual behaviour: Results of a qualitative study.
        AIDS Patient Care and STDs. 2009; 23: 347-356
        • Dumbrill G.C.
        Power and child protection: The need for a child welfare service users’ union or association.
        Australian Social Work. 2010; 63: 194-206
        • Earnshaw V.A.
        • Chaudoir S.R.
        From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures.
        AIDS and Behavior. 2009; 13: 1160-1177
        • Emlet C.
        Experiences of stigma in older adults living with HIV/AIDS: A mixed-methods analysis.
        AIDS Patient Care and STDs. 2007; 21: 740-752
        • Etowa J.B.
        • Bernard W.T.
        • Oyinsan B.
        • Clow B.
        Participatory action research (PAR): An approach for involving Black women’s health in rural and remote communities.
        Journal of Transcultural Nursing. 2007; 18: 349-357
      3. Frank J.R. The CanMEDS 2005 physician competency framework. Better standards. Better physicians. Better care. The Royal College of Physicians and Surgeons of Canada, Ottawa2005
        • Glasby J.
        • Beresford P.
        Commentary and issues: Who knows best? Evidence-based practice and the service user contribution.
        Critical Social Policy. 2006; 26: 268-284
        • Goffman E.
        Stigma: Notes on the management of spoiled identity.
        Simon & Schuster Inc, New York1963
        • Hankin C.
        Gender, sex and HIV: How well are we addressing the imbalance?.
        Current Opinion in HIV and AIDS. 2008; 3: 514-520
        • Huth K.
        • Raphael D.
        From awareness to advocacy: Empowering healthcare professionals to address the social determinants of health.
        MUMJ. 2011; 8 (71–32)
        • Ion A.
        • Thorne J.
        • Chew D.
        • Jaworsky D.
        • Sharma M.
        • Paddock S.
        • Rachlis A.
        • et al.
        Developing a simulated clinical encounter (SCE) to teach about HIV/AIDS: Implications for undergraduate medical students and HIV-positive patient instructors.
        Canadian Journal of Infectious Diseases and Medical Microbiology. 2011; 22: 74B
        • Ion A.
        • Jaworsky D.
        • Chew D.
        • Thorne J.
        • Sharma M.
        • Paddock S.
        • Rachlis A.
        • et al.
        Delivering HIV testing and counseling: What does this mean for undergraduate medical students.
        Canadian Journal of Infectious Diseases and Medical Microbiology. 2011; 22: 74B
        • Israel B.A.
        • Schulz A.J.
        • Parker E.A.
        • Becker A.B.
        Review of community-based research: Assessing partnership approaches to improve public health.
        Annual Review of Public Health. 1998; 19: 173-202
        • Jacobs R.J.
        • Kane M.N.
        HIV-related stigma in midlife and older women.
        Social Work in Health Care. 2010; 49: 68-89
        • Jaworsky D.
        • Chew D.
        • Thorne J.
        • Morin C.
        • McNaughton N.
        • Downer G.
        • Rachlis A.
        • et al.
        From patient to instructor: Honoring the lived experience.
        Medical Teacher. 2012; 34: 339-340
      4. Jaworsky, D., Thorne, J.G., Chew, D., Morin, C., McNaughton, N., Downer, G., … Rachlis, A. Involving people living with HIV in an interactive HIV counselling and testing simulation for medical students at the University of Toronto: A pilot study. In Abstract Program of the Ontario HIV Treatment Network Research Conference, Toronto, Ontario, November 2010 (Oral 108).

        • Kako P.M.
        • Dubrosky R.
        “You comfort yourself and believe in yourself”: Exploring lived experiences of stigma in HIV-positive Kenyan women.
        Issues in Mental Health Nursing. 2013; 34: 150-157
        • Kates J.
        • Carbaugh A.
        HIV/AIDS policy fact sheet women and HIV/AIDS in the United States.
        The Henry J. Kaiser Family Foundation, New York2006
        • Krentz H.B.
        • Dean S.
        • Gill M.J.
        Longitudinal assessment (1995–2003) of hospitalizations of HIV-infected patients within a geographical population in Canada.
        HIV Medicine. 2006; 7: 457-466
        • Land H.
        • Linsk N.
        HIV stigma and discrimination: Enduring issues.
        Journal of HIV/AIDS & Social Services. 2013; 12: 3-8
      5. Legislative Assembly of Ontario. (2003). Bill 22. Tommy Douglas Act (Patients' Bill of Rights): An Act to promote patients' rights. Private Member's Bill. Ontario, Canada.

        • Lekas H.-M.
        • Siegel K.
        • Schrimshaw E.W.
        Continuities and discontinuities in the experiences of felt and enacted stigma among women with HIV/AIDS.
        Qualitative Health Research. 2006; 169: 1165-1190
        • Link B.G.
        • Phelan J.C.
        Conceptualizing stigma.
        Annual Review of Sociology. 2001; 27: 363-385
        • Logie C.H.
        • James L.
        • Tharao W.
        • Loutfy M.
        HIV, gender, race, sexual orientation, and sex work: A qualitative study of intersectional stigma experienced by HIV-positive women.
        PLoS Medicine. 2011; 8: e1001124
        • Long C.
        HIV-positive women on secrets, condoms and gendered conversations.
        Sexualities. 2009; 12: 701-720
        • Long C.
        “I don’t know who to blame”: HIV-positive South African women navigating heterosexual infection.
        Psychology of Women Quarterly. 2009; 33: 321-333
        • Loutfy M.
        • Raboud J.
        • Wong J.
        • Yudin M.
        • Diong C.
        • Blitz S.
        • Walmsley S.
        • et al.
        High prevalence of unintended pregnancies in HIV-positive women of reproductive age in Ontario, Canada: A retrospective study.
        HIV Medicine. 2012; 13: 107-117
      6. MacGillivray, J., & Yudin, M. (2012). The Positive Pregnancy Program Best practice care for HIV positive pregnant women. Oral presentation at the Interdisciplinary HIV Pregnancy Research Group (IHPREG) Conference, Toronto, Ontario, June 14 & 15, 2012.

      7. Makuwaza, T., Thorne, J., McNaughton, N., Sharma, M., Chew, D., Jaworsky, D., … Rachlis, A. Exploring Lived Experience as a Catalyst for Change in HIV Medical Education. In Abstract Program of the Ontario HIV Treatment Network Research Conference, Toronto, Ontario, November 2012 (E-Poster).

        • Marx R.
        • Katz M.H.
        • Park M.-S.
        • Gurley R.J.
        Meeting the service needs of HIV-infected persons: Is the Ryan White CARE Act succeeding?.
        Journal of Acquired Immune Deficiency Syndromes & Human Retrovirology. 1997; 14: 44-55
        • McCoy L.
        HIV-positive patients and the doctor-patient relationship: Perspectives from the margins.
        Qualitative Health Research. 2005; 15: 791-806
        • McGibbon E.
        Health and health care: A human rights perspective.
        in: Raphael D. Social determinants of health: Canadian perspectives. 2nd ed. Canadian Scholars’ Press Inc., Toronto2009
      8. McNaughton, N., Thorne, J., Sharma, M., Chew, D., Jaworsky, D., Makuwaza, T., … Rachlis, A. The role of patient instructors in HIV medical education: Learning through lived experience. In Abstract Program of the Canadian Conference on Medical Education, Quebec City, Quebec, April 2013 (Poster 90642).

        • Melchoir L.A.
        • Huba G.L.
        • Gallagher T.
        • Jean-Louis E.
        • McDonald S.S.
        • Smereck G.A.
        • Panter A.T.
        • et al.
        Unmet needs in groups of traditionally underserved individuals with HIV/AIDS: Empirical models.
        Home Health Care Services Quarterly. 2001; 19: 29-51
      9. Ministry of Health and Long-Term Care. (2004). Personal Health Information and Protection Act. Retrieved from Accessed July 15, 2013.

        • Montoya I.D.
        • Whitsett D.D.
        New frontiers and challenges in HIV research among older minority populations.
        Journal of Acquired Immune Deficiency Syndromes. 2003; 33: S218-S221
      10. Morin, C., Jaworsky, D., Chew, D., Thorne, J., McNaughton, N., Downer, G., … Rachlis A. Training Canadian medical students in HIV counselling and testing by involving people living with HIV: A pilot study. In Abstract Program of the Canadian Conference on Medical Education, Toronto, Ontario, May 2011 (Oral OP-109).

        • Newman L.A.
        The health care system as a social determinant of health: Qualitative insights from South Australian maternity consumers.
        Australian Health Review. 2009; 33: 62-71
        • Nyblade L.
        • Singh S.
        • Ashburn K.
        • Brady L.
        • Olenja J.
        “Once I begin to participate, people will run away from me”: Understanding stigma as a barrier to HIV vaccine research participation in Kenya.
        Vaccine. 2011; 29: 8924-8928
        • O'Brien K.K.
        • Bayoumi A.M.
        • Strike C.
        • Young N.L.
        • Davis A.M.
        Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework.
        Health and Quality of Life Outcomes. 2008; 6: 1-10
        • O’Brien K.K.
        • Davis A.M.
        • Strike C.
        • Young N.L.
        • Bayoumi A.M.
        Putting episodic disability into context: A qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS.
        Journal of the International AIDS Society. 2009; 12: 1-11
        • OHTN Rapid Response Service
        Rapid review: Knowledge and training needs of health professionals working with people with HIV: With considerations for mixed urban rural care settings.
        Ontario HIV Treatment Network, Toronto, ON2010 (January, 2010)
      11. Ontario Advisory Committee on HIV/AIDS (OACHA). (2002 June). A Proposed HIV/AIDS strategy for Ontario to 2008, Toronto, ON.

      12. Ontario AIDS Network. (2011). Living and serving 3: GIPA engagement guide and framework for Ontario ASOs. Retrieved from Accessed July 15, 2013.

      13. Ontario AIDS Network. (2012). The Ontario Accord: A statement of solidarity with GIPA/MIPA. Retrieved from Accessed July 15, 2013.

      14. Parker, R., & Aggleton, P. (2002). HIV/AIDS-related stigma and discrimination: A conceptual framework and agenda for action, USAIDS Horizons Program. Retrieved from Accessed July 15, 2013.

        • Parker R.
        • Aggleton P.
        HIV and AIDS-related stigma and discrimination a conceptual framework and implications for action.
        Social Science & Medicine. 2003; 57: 13-24
        • Pence E.
        Safety for battered women in a textually mediated legal system.
        Studies in Cultures, Organizations, and Societies. 2001; 7: 199-229
        • Pence E.
        • Shepard M.
        Coordinating community responses to domestic violence: Lessons from Duluth.
        Sage, Thousand Oaks, CA1999
        • Peterson J.L.
        The challenges of seeking and receiving support for Women living with HIV.
        Health Communication. 2010; 25: 470-479
      15. Praxis International. (2010). Institutional analysis/community assessment. Retrieved from Accessed July 15, 2013.

      16. Public Health Agency of Canada (PHAC). (2009). Population-specific HIV/AIDS status report: People from countries where HIV is endemic - Black people of African and Caribbean descent living in Canada. Retrieved from

      17. Public Health Agency of Canada (PHAC). (2010a). HIV/AIDS Epi Updates – July 2010. Chapter 5: HIV/AIDS Among Women in Canada. Available from Retrieved September 8, 2013.

      18. Public Health Agency of Canada. (2010b). HIV/AIDS Epi Updates - July 2010. Chapter 8: HIV/AIDS Among Aboriginal People in Canada. Retrieved from Retrieved on 15-Sep-2014.

      19. Public Health Agency of Canada. (2010c). Population-Specific HIV/AIDS Status Report: Aboriginal Peoples. Retrieved from Retrieved on 15-Sep-2014.

      20. Public Health Agency of Canada. (2011). Summary: Estimates of HIV Prevalence and Incidence in Canada, 2011. Retrieved from Retrieved on 15-Sep-2014.

        • Raphael D.
        Social determinants of health Canadian perspectives.
        Canadian Scholars Press, Toronto, ON2004
        • Raphael D.
        Social determinants of health present status, unanswered questions, and future directions.
        International Journal of Health Services. 2006; 364: 651-677
        • Reimer Kirkham S.
        • Anderson J.
        Postcolonial nursing scholarship: From epistemology to method.
        Advances in Nursing Science. 2002; 25: 1-17
        • Sandelowski M.
        • Lambe C.
        • Barroso J.
        Stigma in HIV positive women.
        Journal of Nursing Scholarship. 2004; 36: 122-128
        • Scandlyn J.
        When AIDS became a chronic disease.
        The Western Journal of Medicine. 2000; 172: 130-133
        • Sinding C.
        Using institutional ethnography to understand the production of health care disparities.
        Qualitative Health Research. 2010; 20: 1656-1663
        • Stiefel M.
        • Nolan K.
        A guide to measuring the triple aim: Population health, experience of care and per capita cost.
        Institute for Healthcare Improvement, Cambridge, MA2012
        • Teti M.
        • Bowleg L.
        • Lloyd L.
        ‘Pain on top of pain, hurtness on top of hurtness’: Social discrimination, psychological well-being, and sexual risk among women living With HIV/AIDS.
        International Journal of Sexual Health. 2010; 22: 205-218
        • The Antiretroviral Therapy Cohort Collaboration (TATCC)
        Life expectancy of individuals on combination antiretroviral therapy in high-income countries a collaborative analysis of 14 cohort studies.
        Lancet. 2008; 372: 293-299
        • Thompson M.
        • Aberg J.
        • Cahn P.
        • Montaner J.
        Antiretroviral Treatment of Adult HIV Infection – 2010: Recommendations of the International AIDS Society–USA Panel.
        JAMA. 2010; 304: 321-333
      21. Toronto People with AIDS Foundation. (2013). CHIME Study: Are you interested in becoming a community educator? Retrieved from

        • Turan J.M.
        • Miller S.
        • Bukusi E.A.
        • Sande J.
        • Cohen C.R.
        HIV/AIDS and maternity care in Kenya: how fears of stigma and discrimination affect uptake and provision of labor and delivery services.
        AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV. 2008; 20: 938-945
      22. UN Committee on Economic, Social and Cultural Rights (CESCR). (2000). General Comment No. 14. Substantive Issues Arising in the Implementation of the International Covenant on Economic, Social and Cultural Rights, UN Doc. E/C.12/2000/4.

        • Van Den Tillaart S.
        • Kurtz D.
        • Cash P.
        Powerlessness, marginalized identity, and silencing of health concerns voiced realities of women living with mental health diagnosis.
        International Journal of Mental Health Nursing. 2009; 18: 153-163
        • Vanable P.A.
        • Carey M.P.
        • Blair D.C.
        • Littlewood R.A.
        Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women.
        AIDS and Behavior. 2006; 10: 473-482
        • Voisin D.R.
        • Bird J.D.P.
        • Shiu C.-S.
        • Kreiger C.
        “It’s crazy being a Black, gay youth.” Getting information about HIV prevention: A pilot study.
        Journal of Adolescence. 2012; 36: 111-119
        • Wilson A.
        • Pence E.
        U.S. Legal interventions in the lives of battered women: An indigenous assessment.
        in: Smith D. Institutional ethnography as practice. Rowman & Littlefield Publishers, Inc, Maryland2006: 199-225
        • Wood S.A.
        • Tobias C.
        • Mccree J.
        Medication adherence for HIV positive women caring for children: in their own words.
        AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV. 2004; 16: 909-913
        • Yin R.K.
        Case study research: Design and methods.
        3rd ed. Sage, Thousand Oaks, CA2003


      Allyson Ion, BSc, MSc, is currently a PhD Student in the School of Social Work at McMaster University. Allyson has contributed to numerous clinical and community-based HIV research initiatives regarding women, motherhood, health and social service utilization, and peer support since 2006.


      Dawn Elston, BA, MA, is a Research Coordinator in the Department of Family Medicine at McMaster University. Dawn collaborated on several research projects in the area HIV and women's health between 2006 and 2012.