HIV-Specific Multidisciplinary Care Mediates for Marginalization and Perceived Stigma Among HIV Positive African American Women Cleo V. Townsend, Ph.D., MFT Collaborative Family Healthcare Association 13 th Annual Conference October 27-29, 2011 Philadelphia, Pennsylvania U.S.A. Session # H5-Tapas October 29, :30 PM

Faculty Disclosure In accordance with the policies of the Accreditation Council for Continuing Medical Education (ACCME) and the Accreditation Council for Pharmacy Education (ACPE) My spouse or I have not had any relevant financial relationships during the past 12 months with commercial interests.

Need/Practice Gap & Supporting Resources Little research has examined the experience of role strain on the physical, mental, and social health of HIV positive women as they continue their roles in the home and community. Findings are presented from a study that explored the experience of role strain in HIV positive African American single mothers. The presentation will provide information about the impact of stigma on HIV positive parenting, HIV positive women’s self- perception and health behaviors, and potential strategies to mediate the effects through design of HIV specific multidisciplinary care settings.

Objectives Increase knowledge about the stressors encountered by parenting of HIV positive African American women. Discuss the impact of perceived stigmatization of HIV positive women on their self-image. Delineate some of the consequences of perceived stigmatization on disclosure of HIV to family members, sexual partners, and to children. Describe how healthcare settings have the potential to mediate stigmatization and discrimination.

Expected Outcome Participants have the potential to provide, via collaboration with other health professionals, a “stigma free” zone where women can engage more fully in their healthcare. Therapists can intervene by helping HIV positive African American single mothers develop social and professional networks that decreases their exposure to professionals who do not understand their special circumstances. The goal is to move outside the boundaries of traditional medical care for women living with HIV.

Learning Assessment What stressors do AA women living with HIV encounter, and how do these stressors differ from women suffering with other illnesses? In what ways do the images of HIV disease impact women living with HIV/AIDS? What is the primary lens women living with HIV/AIDS use in viewing themselves. Explain the impact of perceived stigmatization on disclosure of HIV/AIDS status. Describe how health care settings have the potential to mediate stigmatization and discrimination.

Stressors Encountered by HIV Positive AA Mothers The multiple challenges HIV positive African American single mothers encounter may not sufficiently preserve an emotional balance needed for tasks such as (Karus, Siegel & Raveis, 1999): maintaining self-care cultivating relationships managing decreasing resources preparing for an uncertain future The physical, psychological, and social demands of living with a chronic illness, stigma associated with HIV/AIDS, racial and gender disparities highlight some of the multiple stressors encountered daily.

Impact of Stigma on Self-Image The most stressful aspect of HIV/AIDS is the fear of disclosure, secrecy, or having shame (Gray, 2004). Stigma and shame are distinct but related constructs (Cunningham, Tschann, Gurvey, Fortenberry, & Ellen, 2002). Internalized stigmatization has caused women living with HIV/AIDS to perceive themselves as blemished, resulting in a decision to protect themselves by living in secrecy.

Influence of Stigma on Disclosure of HIV HIV related stigma serves as a greater catalyst for relational strain than the actual responsibilities of specific roles (e.g., mother, partner, family member). Mothers have difficulty disclosing their HIV diagnosis to their children due to fear of a negative reaction. The choice to disclose to intimate partners is a double edged sword (Hays, Mckusick, Pollack, Hilliard, Hoff & Coates, 1993). Women fearful of disclosing to family experience the same stress as those dealing with family rejection.

Multidisciplinary Care Settings HIV positive AA women reported frequent incidences of stigmatization by families and community and high levels of shame over their HIV. However those reporting the most discrimination and information about health disparities were not connected to a HIV specific multidisciplinary care practice. By exploring the intersection of race, gender, class, and disease, a fundamental premise for negotiating public health policy in the development of multidisciplinary practices for HIV positive women and their families can be established.

Conclusion HIV/AIDS stigmatization is a dominating social force- needs to be reexamined in relation to the intersection with race, gender, and class. Reasons for disparities are complex and pervasive across populations, conditions, and healthcare settings and services (Cooper, 2008). This particular population needs access to treatment facilities where the staff is sensitive to their issues without pre-judgment.

Implications for Future Research Further delineate the specific stigmatization that occurs with women living with HIV/AIDS. Impact of stigma on health behaviors. Additional research on health systems working to counteract stigma in the larger society. Opportunities include providing skill building around attitudes and behaviors to improve resiliency, improve disclosure of diagnosis, and improve adherence to medications.

References Cooper, L.A., (2008), Overview of racial and ethnic disparities in healthcare. In M. C. Beach, L. A. Cooper, & B. Ojikutu (Co-Chairs), Optimizing care for minority women with HIV/AIDS. Symposium conducted by John Hopkins University School of Medicine, Baltimore, MD. Cunningham, S., Tschann, J., Gurvey, J., Fortenberry, J., & Ellen, J. (2002). Attitudes about sexual disclosure and perceptions of stigma and shame. Sexually Transmited Infections, 78, Gray, D. (2004). A theory of healing in internalized HIV-related stigma. Journal of Theory Construction and Testing, 8, Hays, R., McKusick, L., Pollack, L., Hilliard, R., Hoff, C., & Coates, T. (1993). Disclosing HIV seropositivity to significant others. AIDS, 7, Karus, D., Siegel, K., & Raveis, V.H. (1999). Psychosocial adjustment of women to living with HIV/AIDS. AIDS and Behavior, 3,

Session Evaluation Please complete and return the evaluation form to the classroom monitor before leaving this session. Thank you!