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Perceived HIV/AIDS Stigma: A Multinational Study

Front Row: Lucy Makoae, Joanne Naidoo, Thecla Kohi
Middle Row: Minrie Greeff, Maureen Chirwa, Priscilla Dlamini, René Phetlhu
Back Row: Anita Stewart, Leana Uys, Bill Holzemer, Kevin Durrheim
The University of California, San Francisco (UCSF), the University of KwaZulu-Natal, and a group of nurse researchers in southern Africa have received funding to study HIV/AIDS and stigma. AIDS stigma and discrimination continue to affect those living with and affected by HIV disease and their health care providers, particularly in southern Africa where the burden of AIDS is so significant. Many health care workers in this region have come to the conclusion that unless stigma is conquered, the illness will not be defeated. This five-year collaborative project links researchers in Lesotho, Malawi, South Africa, Swaziland, and Tanzania, along with the Southern African AIDS Network of Nurses and Midwives (SANNAM), with UCSF and the University of KwaZulu-Natal to:
1. Develop and validate two linguistically and culturally appropriate measures of perceived HIV/AIDS stigma appropriate for person living with HIV/AIDS and nurses;
2. Test a model, using longitudinal data, of how stigma affects, and is affected by (2a) quality of health care and quality of life for persons living with HIV/AIDS and (2b) quality of work life and quality of life for nurses and;
3. Utilize community-based participatory research methods to intervene at a community level with five national nurses associations and to track the impact of the community-level events on the perceived stigma of nurse members of those associations.
In October 2003, representatives from all of the sites met in Pretoria, South Africa to begin the first stages of the research that will take place through this project. Participants developed research tools and protocols, and received further training in relevant research methodologies.
In March 2005, members of the team were Scholars in Residence at the Rockefeller Foundation's Bellagio Study and Conference Center. At this meeting, the team drafted the two stigma scales and made plans for testing and implementing them.
In June 2006, the team met in Windhoek, Namibia to review data from the first phase of the cohort study. Plans were made for the next phase of data collection, and the team discussed the first stages of the stigma reduction intervention.
In February 2007, the team met in San Francisco. And also met at the Africa Center in South Africa in August 2007. Both meetings focused on plans for a stigma reduction intervention that is currently under way.
This project was supported by a grant from the National Institutes of Health's Fogarty International Center, R01 TW006395 (PI: Holzemer & Co-PI: Uys) and partially supported by the Health Resources and Services Administration's Global HIV/AIDS Program, U.S. Government.
Published articles:
Holzemer, W.L. & Uys, L. (2004). Managing AIDS Stigma. Journal of Social Aspects of HIV/AIDS. 1(3): 165-174.
Uys, L., Chirwa, M., Dlamini, P., Greeff, M., Kohi, T., Holzemer, W.L., Makoae, L., Naidoo, J.R., & Phetlhu, R. (2005). Eating plastic, winning the lotto, joining the WWW: Descriptions of HIV/AIDS in Africa. Journal of the Association of Nurses in AIDS Care. 16(3): 11-21.
Kohi, T.W., Makoae, L., Chirwa, M., Holzemer, W.L., Phetlhu, D.R., Uys, L., Naidoo, J., Dlamini, P.S., Greeff, M. (2006). HIV and AIDS stigma violates human rights in five African countries. Nursing Ethics. 13(4): 404-415.
Dlamini, P., Kohi, T., Uys, L. Phetlhu, R., Chirwa, M., Naidoo, J., Holzemer, W., Greeff, M., Makoae, L. (2007) Manifestations of HIV/AIDS stigma: Verbal and physical and neglect abuse in five African countries. Public Health Nursing. 24(5): 389-399.
Greeff, M. & Phetlhu, D.R. (2007) The meaning and effect of HIV/AIDS stigma for people living with AIDS and nurses involved in their care in the North West Province, South Africa. Curationis. 30(2):12-23.
Holzemer, W.L., Uys, L.R., Chirwa, M.L., Greeff, M., Makoae, L.N., Kohi, T.W., Dlamini, P.S., Stewart, A.L., Mullan, J., Phetlhu, R.D., Wantland, D. & Durrheim, K. (2007) Validation of the HIV/AIDS Stigma Instrument- PLWA (HASI-P). AIDS Care. 19(8): 1002-1012.
Holzemer, W.L., Uys, L., Makoae, L., Stewart, A., Phetlhu, R., Dlamini, P., Greeff, M., Kohi, T.W., Chirwa, M., Cuca, Y., & Naidoo, J. (2007). A conceptual model of HIV/AIDS stigma from five African countries Journal of Advanced Nursing. 58(6): 541-551.
Naidoo, J.R., Uys, L.R., Greeff, M., Holzemer, W.L., Makoae, L., Dlamini, P., Phetlhu, R.D., Chirwa, M., & Kohi, T.(2007). Urban and rural differences in HIV/AIDS stigma in five African countries. African Journal of AIDS Research. 6(1): 17-23.
Greeff, M., Phetlhu, D.R., Makoae, L.N., Dlamini, P.S., Holzemer, W.L., Naidoo, J., Kohi, T.W., Uys, L.R., & Chirwa, M.L. (2008) Disclosure of HIV status: Experiences and perceptions of persons living with HIV/AIDS and nurses involved in their care in five Africa countries. Qualitative Health Research. 8(3): 311-324.
Greeff, M., Uys, L.R., Holzemer, W.L., Makoae, L.N., Dlamini, P.S., Kohi, T.W., Chirwa, M.L., Naidoo, J., & Phetlhu, D.R. (2008) Experiences of HIV/AIDS stigma of PLWA and nurses from five African Countries. African Journal of Nursing and Midwifery. 10(1): 78-108.
Makoae, L., Greeff, M., Phethlu, R., Uys, L.R., Naidoo, J.R., Kohi, T., Dlamini, P., Chirwa, M. & Holzemer, W.L. (2008) Coping strategies for HIV and AIDS: A multinational African study. Journal of the Association of Nurses in AIDS Care. 19(2):137-146. PubMed Central: #43524.
Chirwa, M.L., Greeff, M., Kohi, T.W., Naidoo, J.R., Makoae, L.N., Dlamini, P.S., Kaszubski, C., Cuca, Y.P., Uys, L.R. and Holzemer, W.L. (2009) HIV stigma and nurse job satisfaction in five African countries. Journal of the Association of Nurses in AIDS Care. 20(1): 14-21.
Dlamini, P., Wantland, D., Makoae, L., Chirwa, M., Kohi, T., Greeff, M., Naidoo, J., Mullan, J., Uys, L.R. and Holzemer, W.L. (2009). The impact of perceived HIV stigma on reasons for missing ARV medication among persons living with HIV infection in five Africa countries. AIDS Patient Care and STDs. 23(5): 377-387.
Holzemer, W.L., Makoae, L., Greeff, M., Dlamini, P., Kohi, T., Chirwa, M., Naidoo, J., Durrheim, K., Cuca, Y., and Uys, L. (2009) Measuring HIV Stigma for PLHAs and Nurses over Time in Five African Countries. SAHARA: Journal of Social Aspects of HIV/AIDS. 6 (2), 76-82.
Makoae, L.M., Portillo, C.J., Uys, L.R., Dlamini, P.S., Greeff, M., Chirwa, M., Kohi, T.W., Naidoo, J., Mullan, J., Wantland, D., Durrheim, K., Holzemer, W.L. (2009) A comparison of perceived HIV stigma between persons living with HIV infection who are taking and not taking ARV medications in five African countries. AIDS Care. 21(11):1357-1362.
Uys, L.R., Chirwa, M.L., Kohi, T.W., Greeff, M., Naidoo, J.R., Makoae, L.N., Dlamini, P.S., Durrheim, K., Cuca, Y. and Holzemer, W.L. (2009) Evaluation of a health setting-based HIV stigma reduction intervention in five African countries. AIDS Patient Care and STDs. 23(12):1059-1066.
Uys, L.R., Holzemer, W.L., Chirwa, M.L., Dlamini, P., Greeff, M., Kohi, T.W., Makoae, L.N., Stewart, A.L., Mullan, J., Phetlhu, R.D., Wantland, D., Cuca, Y. & Naidoo, J. (2009) The development and validation of the HIV/AIDS Stigma Instrument- Nurse (HASI-N). AIDS Care. 21(2): 150-159.
Kohi, T.W., Portillo, C.J., Durrheim, K., Dlamini, P.S., Makoae, L.N., Greeff, M., Chirwa, M., Naidoo, J., Uys, L.R., and Holzemer, W.L. (2010) Does Perceived HIV/AIDS Stigma Contribute to Nurses' Intent to Migrate in Five African Countries? Journal of the Association of Nurses in AIDS Care. 21(2): 134-143.
Gerretsen, B. (2008) “Antiretrovirals ‘attract stigma’,” The Mercury. February 22, 2008, page 4.
Kuppan, I. (2008) “HIV/AIDS stigma going, not gone,” The Daily News. February 22, 2008, page 6.
Presentations, Posters
and Abstracts:
Uys, L.R. HIV/AIDS Stigma in
Africa, Sigma Theta Tau International Honor Society of Nursing, Hawaii, 14-16
July 2005.
Stigma Symposium, 5th
Annual Conference of Sigma Theta Tau International Lambda-at-Large Chapter,
Ghana, 1-5 August 2005.
- Greeff, M. Challenges of HIV Disclosure: Experiences and Perceptions of Persons
Living with HIV/AIDS and Nurses in Five African Countries.
- Kohi, T. HIV/AIDS Stigma violates human rights in
five African countries.
- Makoae, L. Coping Strategies for HIV/AIDS: A Multinational African Study.
- Uys, L. Methodology of the Africa-USCF Study and
Descriptions of HIV/AIDS in Africa.
Stigma Symposium, University
of Namibia, Namibia, 21 June 2006.
- Chirwa, M. HIV/AIDS Stigma Violates Human Rights
in Five African Countries
- Greeff, M. Disclosure of HIV status: Experiences and Perceptions of Persons
Living with HIV/AIDS and Nurses in Five African Countries.
- Holzemer, W.L. Perceived AIDS Stigma: A
Multinational African Study.
- Makoae, L. Coping Strategies for HIV/AIDS: A Multinational African Study.
Greeff, M and Stigma Research Team. Experiences of HIV/AIDS
Stigma of PLWA and Nurses from five African countries. Poster presented at the
7th International Interdisciplinary Conference: Advances in
Qualitative Methods: Looking to the future: Opportunities & challenges for
qualitative research, Australia, 13-15 July, 2006.
Greeff, M. and Stigma Research Team. Disclosure of HIV
Status: Experiences and Perceptions of Persons Living with HIV/AIDS and Nurses
in Five African Countries. 7th International Interdisciplinary
Conference: Advances in Qualitative Methods: Looking to the future:
Opportunities & challenges for qualitative research, Australia, 13-15 July,
2006.
Kohi, T. HIV/AIDS Stigma Violates Human Rights in Five
African Countries. Keynote Presentation, 2nd International
Conference on Nursing Science & HIV/AIDS, Toronto, Canada, 10-11 August
2006.
Chirwa, M. et al. Gender differences in HIV and AIDS stigma
in five African countries. Paper presented at the annual meeting of the
International Council of Nurses, Yokohama, Japan, 29 May – 1 June, 2007.
Kohi, T. et al. Job satisfaction and migration planning among
nurses in five African countries. Paper presented at the annual meeting of the
International Council of Nurses, Yokohama, Japan, 29 May – 1 June, 2007.
Greeff, M., et al. Experiences of HIV/AIDS Stigma of PLWA and
Nurses from Five African Countries. Poster presented at the 2nd
South African AIDS Conference, Durban, South Africa, June 5-8, 2007.
Greeff., M., et al. Disclosure of HIV Status: Experiences and
Perspectives of Persons Living with HIV/AIDS and Nurses in Five African
Countries. Poster presented at the 2nd South African AIDS
Conference, Durban, South Africa, June 5-8, 2007.
Greeff, M., et al. A Model of HIV/AIDS Stigma from Five
African Countries. Poster presented at the 2nd South African AIDS
Conference, Durban, South Africa, June 5-8, 2007.
Naidoo, J.R., et al. The Development and Validation of Two
Stigma Scales: The HIV/AIDS Stigma Instrument- PLWA (HASI-P) and the HIV/AIDS
Stigma Instrument- Nurse (HASI-N). Poster presented at the 2nd South
African AIDS Conference, Durban, South Africa, June 5-8, 2007.
HIV/AIDS Stigma in Africa. Session at Sigma Theta Tau
International’s 39th Biennial Convention, Baltimore, MD, November
3-7, 2007:
Greeff, M. A Model of HIV/AIDS
Stigma.
Dlamini, P., HIV/AIDS Stigma in
Africa.
Kohi, T. Measuring HIV/AIDS Stigma.
Uys, L. Managing International
Research Project.
Holzemer, W.L., Makoae, L., Dlamini, P., Greeff, M., Chirwa,
M., Kohi, T., Naidoo, J., Mullan, J., Wantland, D., and Uys, L.R. The impact of
ARV medication use on perceived HIV stigma in persons living with HIV infection
in five African countries. Poster presentation, AIDS 2008, August 3-8, 2008.
Mexico City, Mexico.
Greeff, M., Makoae, L., Dlamini, P., Chirwa, M., Kohi, T.,
Naidoo, J., Uys, L., and Holzemer, W.L. Nurses and Persons Living with HIV
Infection Challenge Stigma. Poster presentation, AIDS 2008, August 3-8, 2008.
Mexico City, Mexico.
Makoae, L.N., Dlamini, P., Kohi, T., Chirwa, M. and
Greeff, M. Nurses Experience HIV Stigma by Association: Implications for
Positive Practice Environments in Africa. Symposium presentation. International
Council of Nurses 24th Quadrennial Congress, June 27 – July 4, 2009.
Durban, South Africa.
Instruments:
For a copy of the HIV/AIDS Stigma Instrument-PLWA (HASI-P), click here.
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 License.
For a copy of the HIV/AIDS Stigma Instrument-Nurse (HASI-N), click here.
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 License.
For more information, please contact:
William L. Holzemer, RN, PhD, FAAN
Principal Investigator
UCSF School of Nursing
Community Health Systems
2 Koret Way, Box 0608
San Francisco, CA 94143-0608
Email: bill.holzemer@nursing.ucsf.edu
Leana Uys, RN, RM, DSocSc
Co-Principal Investigator
University of KwaZulu-Natal
School of Nursing
Private Bag x54001
Durban, 4000, South Africa
Email: uys@ukzn.ac.za
Country Principal Investigators:
Lesotho
Lucy N. Makoae, RN, RM, PhD
National University of Lesotho
PO Roma 180
Maseru, 0100, Lesotho
Email: lmakoae@yahoo.com
Malawi
Maureen Chirwa, RN, RM, PhD
Senior Lecturer
University of Malawi
Kamuzu College of Nursing, Basic Studies
Private Bag 1
Lilongwe, Malawi
Email: maureen_chirwa@yahoo.co.uk
South Africa
Minrie Greeff, RN, RM, PhD
North-West University,
Potchefstroom Campus
School of Nursing Science
Private Bag X 6001
Potchefstroom, 2520, South Africa
Email: vpkmg@puknet.puk.ac.za
Swaziland
Priscilla Dlamini, RN, RM, PhD
University of Swaziland
Faculty of Health Sciences
PO Box 369
Mbabane, Swaziland
Email: pdlamini@healthsci.uniswa.sz
Tanzania
Thecla W. Kohi, RN, RM, PhD
Muhimbili University
School of Nursing
College of Health Sciences
PO Box 65004
Dar es Salaam, Tanzania
Email: tkohi@muchs.ac.tz |