Viva Combs Thorsen

HIV-related stigmatization: Experiences from women enrolled in a mother-to-child transmission of HIV prevention program in Malawi: 

HIV-related stigmatization: Experiences from women enrolled in a mother-to-child transmission of HIV prevention program in Malawi Viva Combs Thorsen, MPH Supervisor: Professor Johanne Sundby, MD, MPH Co-supervisor: Francis Martinson, MD, PhD HIV Research Net Conference Friday, October 20, 2006

OUTLINE: 

OUTLINE Background Overview of study Findings Conclusion & Recommendations

Slide3: 

MALAWI Sources: Health Profile: Malawi, USAID Feb 2005 WHO. The world health report, 2006. Population 12.9 million Capital City Lilongwe Life expectancy at birth 41 Poverty (% of population) 65 HIV SITUATON Prevalence 14% Newly infected Women (58%) Antenatal Sentinel Sites 20% Modes of transmission Hetero, MTCT COUNTRY CHARACTERISTICS

HIV and STIGMA: 

HIV and STIGMA Johnathan Mann (1987): Three epidemics HIV/AIDS is stigmatized because it is: Associated with deviant behavior Viewed as the responsibility of the individual Tainted by religious belief and/or thought Perceived to be highly contagious An undesirable form of death Not well understood by the lay community (or health personnel) Source: Alonzo A, Reynolds N. Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science & Medicine 1995; 41(3):303-315

PMTCT and STIGMA: 

PMTCT and STIGMA Efforts to prevent the transmission of HIV from women to their unborn children is known as PMTCT (Prevention of Mother-to-Child Transmission) Stigma elicits fears of abandonment, ostracism, domestic violence or being blamed Consequently, she may: Refuse being tested If tested, rarely discloses to her partner or family members Opt out of PMTCT programs or does not complete all scheduled visits Not comply with breastfeeding recommendations Sources: Nyblade L, Field M. Women, communities, and the prevention of mother-to-child transmission of HIV: Issues and findings from community research in Botswana and Zambia. 2000. Washington, DC, International Center for Research on Women. Painter et al. 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):543-547.

GOAL & OBJECTIVES: 

GOAL & OBJECTIVES The goal of the study was to broaden the understanding of HIV related stigma in the context of prevention of mother-to-child transmission of HIV in Lilongwe, Malawi. More specifically, the objectives were to: Identify and describe the forms of stigmatization experienced by PMTCT clients Investigate the context in which stigmatization is manifested Explore responses to stigmatization by PMTCT clients Explore the dimensions of stigmatization that may influence PMTCT client’s decisions to comply with recommendations Investigate how healthcare workers may mitigate or perpetuate stigmatization in the PMTCT program

OUTLINE: 

OUTLINE Background Overview of study Findings Conclusion & Recommendations

OVERVIEW of STUDY: 

Design: Qualitative Study Setting: Lilongwe, Malawi (antenatal clinic)—Kawale Clinic and Bottom Hospital Study Populations: Pregnant women and new mothers (child<2 years old) who are HIV+ and enrolled in PMTCT program; and healthcare workers who provide antenatal care to them Sample Size: 32 women and 10 healthcare workers Data collection phase: August 23 – November 20, 2005 OVERVIEW of STUDY Parameters:

OUTLINE: 

OUTLINE Background Overview of study Findings Conclusion & Recommendations

Characteristics of Participants: 

Characteristics of Participants Average time of in-depth interview: 63 min (24 min – 110 min)

Objective # 1: 

Objective # 1 Women experienced more felt stigma than either enacted or self stigma They fear being labeled—their social identities are threatened Some experienced abandonment by husbands, family members and friends Some believed it was punishment for their (or their partners’) sin(s) Identify and describe the forms of stigmatization experienced by PMTCT clients Key findings

Objective # 2: 

Objective # 2 Family Husbands - abandoned Relatives - abandoned Community Friends - disassociated and gossiped Strangers - disparaged and gossiped Healthcare setting Nurses - yelled, made snide remarks Church has been supportive Key findings Investigate the context in which stigmatization is manifested

Objective # 3: 

Objective # 3 Two types of responses: Immediate: Confront Challenge Ignore Seek comfort Long-term (coping in the form of): Religion Family Support groups Advice Stigma management Key findings Explore responses to stigmatization by PMTCT clients

Objective # 4: 

Objective # 4 The degree to which the women are able to conceal their HIV+ status affects their social interactions Activities within the PMTCT program may inadvertently disclose the women’s status: Recommendations Incentives Program’s location Poverty and gender inequality play a greater role in women’s decision to participate Explore the dimensions of stigmatization that may influence PMTCT client’s decisions to comply with recommendations Key findings

Objective # 5: 

Objective # 5 Nursing staff tend to perpetuate stigmatization through poor bedside manners, and discussing personal issues in public Lack of protective wear, disinfectants, and equipment might heighten some nurses fears of becoming infected via medical transmission Physical building indirectly disclose women’s HIV status Stigmatization is mitigated through health education, collaboration, volume control, and records mgmt Investigate how healthcare workers may mitigate or perpetuate stigmatization in the MTCT prevention program Key findings

OUTLINE: 

OUTLINE Background Overview of study Findings Conclusion & Recommendations

CONCLUSIONS: 

CONCLUSIONS The goal of the study was to broaden the understanding of HIV related stigma in the context of prevention of mother-to-child transmission of HIV in Lilongwe, Malawi. Findings showed that the women in the study had an overwhelming fear of being associated with immoral behavior due to HIV being linked to promiscuity, infidelity, and prostitution. As such, they feared that their family would not care for or love them. They also feared that friends would severe all ties and gossip about them Felt stigma also affected the manner in which women adhered to PMTCT recommendations However, poverty and gender inequality issues had a greater influence on the women’s decision to comply with PMTCT recommendations

RECOMMENDATIONS: 

RECOMMENDATIONS The PMTCT should consider participating in the following seven activities: Increase the number of anti-stigma activities within the community Expand the scope of hospital staff training Expand the scope of counseling Reduce involuntary disclosure Integrate the PMTCT perspective into development initiatives Optimize infrastructure and supplies Modify PMTCT terminology

ACKNOWLEDGEMENTS: 

ACKNOWLEDGEMENTS Supervisors: Johanne Sundby, MD, MPH Francis Martinson, MD, PhD UNC Project: Nursing and administrative staff Government Nurses at Kawale Clinic & Bottom Hospital Interpreter: Tasila Zulu Transcribers: Lucy Tamara Mlia, Chrissie Chilima, Agatha Bula, Duncan Kwaitana, Derik Chiwanda, Thandi, Mtisunge Honester Kazembe, Trainer: Sarah Mwale Quality Control: Norman Lufesi *Jacqueline Nkhoma The women who shared their experiences

Slide20: 

“Zikomo” – Thank You!