Martha Stewart* is a 32-year-old African-American woman who volunteered to participate in the UCLA Women and Family Project. Martha has AIDS and found out about it as so many women do: in the emergency room with flu-like symptoms, such as fever, chills, shortness of breath, and diarrhea. Little did she know she'd be admitted to the hospital and diagnosed not just with HIV, but with AIDS.
That was 18 months ago. Only she and her son have lived with her secret ever since, telling no one besides the medical staff who now treats her. She's never gone to a support group or talked to a friend about her health problems for fear of rejection. That is until now.
A social worker in her clinic told her about a new study just underway, and she decided to share her personal experiences with one of the experienced interviewers. The study, a five year research project on how women and their families cope with HIV and AIDS, will include women between the ages of 18 and 45. While the focus will be on African-American, Latina and Caucasian women, women of all ethnicities are invited to participate. They will be screened and interviewed 5 times over 2 years, and reimbursed $50 each time they complete an interview session, totaling $250.
Women who join the study can expect to have a short medical screening, including a blood test and pap smear, and a face-to-face interview focusing on coping, relationships, and psychological well-being. There will be no ongoing medical care provided by the study, so it will not interfere with existing care, but needed referrals will be made in the event a woman has no provider. The interview can take place in either Spanish or English, and in order to make the process as comfortable, convenient and private as possible, women can be interviewed at our sites, UCLA or King/Drew Medical Center, or in their own homes. Baby-sitting and refreshments will also be provided.
Because their perceptions of HIV- affected family life will be an important facet of the study, male and female partners of the women in the study will also be invited to share their experiences. Whether they are affected or infected by HIV, they will participate in a shorter interview, and will also have blood tests. Because the interviews will be strictly confidential, the information gathered will not be shared between partners, other family members, or medical staff, unless permission to do so is obtained.
Sharing this information with any one can be difficult, especially if the woman goes into great detail about her life. For this reason, a highly trained, multiethnic staff will conduct the interviews. The investigators of this study are nationally known for their research on HIV+ men and women, coping, sexuality, and a range of other topics relevant to this study. They bring expertise to this vastly under-researched and underserved population.
This study hopes to document the progression of HIV disease in women, functioning, and psychological well-being in the context of family life.
For further information about how to enroll in this project, please contact Dr. Gail Wyatt at 310-825-0193 or Dr. Julie Axelrod at 310-794-9947.