Celeste Watkins-Hayes, Ph.D. Principal Investigator
Departments of Sociology & African American Studies, Northwestern University
Northwestern University Institute for Policy Research

Begun in 2005, Sister to Sister (S2S) served as the pilot study preceding Health, Hardship, & Renewal, and explored the social processes and experiences of 30 Chicago-area Black-identified women infected with Human Immunodeficiency Virus (HIV).

The specific aims of the pilot study were:

  • To explore how the everyday lives of the women are affected (or not) by having HIV by documenting and describing their lived experiences
  • To tease out which social domains are most relevant in the context of the women’s health status. The social domains of primary interest are: work, school, and other forms of professional training; social networks, housing, and use of social services; intimate relationships, marriage, and sexual behavior; and child bearing and child rearing choices and practices
  • To consider the ways in which socioeconomic class and age shape the women’s options, decisions, strategies, and resources to medically manage and cope with HIV/AIDS and to structure their lives in its wake
  • To document the women's perceptions and narratives of the social context – relationships, beliefs, attitudes, and behaviors – that put them at risk for contracting HIV/AIDS and their understandings of their risk of infecting others
  • To gather themes and concepts that would inform the HHR Study
  • To assess the feasibility of launching a larger study that investigates how experiences, processes, narratives, behaviors, and outcomes in the previously named social domains change over time
  • To assess the feasibility of the pilot study’s recruitment, project staffing, and data collection strategies for a larger study (Health, Hardship, & Renewal: Economic Strategies of Women Living with HIV/AIDS)

The ultimate goal of the study was to highlight some of the social consequences of HIV/AIDS for this population by exploring the short and long-term social and economic effects of the disease on the well-being of the women and their families.

GENERAL STUDY DESIGN

  • 2 face-to-face in-depth interviews and one observation session through three monthly meetings with each respondent
  • Subjects were compensated for each interview

SUBJECT RECRUITMENT & SELECTION

  • Study advertising through social service agencies and medical providers
  • Telephone screening

PROTECTION OF HUMAN SUBJECTS

  • Potential participants were informed verbally and in writing of any potential risks that might emerge from their involvement in the study and asked to sign a consent form, per IRB guidelines.
  • All participants were informed of the volunteer nature of this study as a matter of the consent
  • Respondents were told that if for any reason they were uncomfortable with any aspects of the interview, they could stop and leave the interview or simply not answer any question(s) with which they were not comfortable.
  • Extensive procedures were in place to reduce psychological risk, protect confidentiality, and ensure privacy.
  • Interviews were conducted in a private office or conference room at a community-based agency rented by the Principal Investigator to protect the safety of participants and to ensure confidentiality and privacy during the interview.

FUNDING

This project was funded through a pilot study grant provided by the Center for AIDS Prevention Studies HIV-Prevention Research in Minority Communities Collaborative Program, University of California – San Francisco.

To tease out which social domains are most relevant in the context of the women’s health status. The social domains of primary interest are: work, school, and other forms of professional training; social networks, housing, and use of social services; intimate relationships, marriage, and sexual behavior; and child bearing and child rearing choices and practices.


The Social and Economic Context of Black Women Living with HIV/AIDS in the US: Implications for Research
In Sex, Power, and Taboo: Gender and HIV in the Caribbean and Beyond
. Kingston, Jamaica: Ian Randle Publishers.  READ THE FULL ARTICLE  >