Surviving HIV/AIDS in the Inner City: How Resourceful Latinas Beat the Odds

1. Surviving HIV/AIDS in the Inner City: How Resourceful Latinas Beat the Odds Sabrina Marie Chase, Ph.D. Joint Urban Systems Ph.D. Program in Urban Health Rutgers School of Nursing Perinatal Conference November 18, 2013

2. Anywhere the struggle is great, the level of ingenuity and inventiveness is high. EleniGabreMadhin

3. What can we learn by listening to resourceful women’s stories?

4. Structural violence can be thought of as hardships that result from “neither nature nor pure individual will…but…historically given (and often economically driven) processes and forces that conspire to constrain individual agency”. Farmer, Simmons, and Connors 1996

5. Inner city structural violenceoften manifests as… • poverty • lack of resources • gender bias • AIDS-related stigma • SAVA: substance abuse, violence, and AIDS

6. Newark’s resourceful women face many barriers. It suggests that women like Nini… • can draw on their own intelligence and experience, • activate helpful social networks, and • draw on key allies …in order to act as effective agents and live longer, more fulfilling lives.

7. In many ways, Nini triumphed in the face of stigma and structural violence. • She demanded, and got, a disability hearing. • She drew on a reservoir of data about the situation and the resources available to her. • She found multiple allies who could help her. • She persisted until her appeal was successful---potentially adding years to her life.

8. The Help-Seeking Pathways Study

9. The questions • Given their limited resources, how did inner city HIV+ Latinas manage HIV/AIDS? • Did they seek out alternatives to conventional medical treatments? • Did the structural violence they faced deprive them of their agency? • What can they teach us about our health care system and how it operates?

10. The women • Seventeen HIV+ Puerto Rican women • Ten born in Puerto Rico, seven on the mainland of the United States • All between 28–51; most between 31-39 • All mothers • At least eleven acquired HIV from a husband or long-term boyfriend • Six probably acquired it from intravenous drug use or sex work

11. Portraits: Paquita and Cristina • Paquita: “When I got this thing I was really scared. I’m losing my mind…sometimes I think I gotta go this way and then…I gotta go the other way…It gets me scared sometimes…being alone.” • Cristina: “I just don’t feel as comfortable…Like the doctors and nurses…they’re all White Americans. And so I feel like they look down sometimes.”

12. Portraits: Nini and Deborah • Nini: “I am lucky and I know it. Dr. Sergio gave me his pager number…I know he treats me better than other patients…” • Deborah: “It’s good to have a network of people you know that can help you. And if they have a problem they’re going through, I always try to help [them] find a solution, too.”

13. Using Bourdieu

14. Cultural Capital A group of important resources (social class, cultural background, legacies of achievement) that individuals acquire from the families who raise them to adulthood Habitus A class and subculture-specific worldview that prizes one set of preferences and activities over others

15. Social Capital The kinds of benefits that emerge from relationships built on trust and reciprocity; the aid and support exchanged by people sharing a social network Embodied Cultural Capital Social toolkits that shape the way individuals speak, act, or otherwise “perform” in public

16. Listening to Resourceful Women

17. Almost all women experienced • HIV-related symptoms, medication side effects, or both • Fear of abandoning their children or dying a wasting death • Discrimination and economic hardship • Barriers to acquiring social services and clinical care

18. All women wanted • Access to CAM in addition to biomedicine • Continuity of care • Healing relationships with doctors and nurses they trusted, and who • offered a non-judgmental emotional bond • managed power in ways that benefitted them • displayed a commitment to their care over time

19. More than anything else, HIV+ Latinas wanted good primary care blended into their HIV care, and they wanted it from physicians, nurses and technicians they could trust.

20. Average capital women • Had greater social support needs, but struggled to get them met • Rarely established strong, caring relationships with a doctor or nurse • Reported more chronic symptoms and/or medication side effects • Used fewer CAM modalities • Struggled to deploy their agency

21. But…broad capital women • Gathered information in order to make informed choices • Established a strong rapport with particular doctors and nurses and built ongoing relationships with them • Collaborated with both clinicians and social workers • Reported more periodic acute hospitalizations • Used more CAM modalities • Successfully deployed their agency

22. The difference • Formal education • Institutionalization • Participation in formal recovery programs Broad exposure and ongoing interaction with diverse ethnic and social groups appeared to explain the difference between average and broad capital women.

23. Answering the questions • Women with average capital and women with broad capital managed HIV/AIDS differently. • Broad capital women used social capital, built on cultural capital, to forge key alliances with clinicians and socials workers. • These alliances helped them survive and even thrive. Average capital women struggled and often failed to create life-sustaining alliances, and because of this, both the quality and length of their lives suffered.

24. Both average capital women and broad capital women used CAM, but broad capital women tried more modalities and used them more consistently. • Under conditions of structural violence, social capital---built on broad cultural capital---mediates agency. Broader toolkits translate into greater agency and longer, more fulfilling lives.

25. Questions for the future • What does this mean for clinician education and the practice of medicine? • What kinds of strategies can help average capital women and men navigate the system and enjoy better care? • How can the expertise of broad capital women be tapped to improve the system and assist us all?

26. How do we transform a struggling health care system that offers consistently high quality care to only the most exceptional? How can we create an urban safety net that treats every patient equally well?