Community input is key to a successful and sustainable program. For this reason, Project Inform conducted a women's needs assessment this year. Its goal was to identify gaps, needs or barriers HIV-positive women may have in accessing and using information about treatment and care. The needs assessment helped Project Inform to understand how to better serve the educational, public policy and treatment/research advocacy needs and concerns for women living with HIV/AIDS. This article talks about the results of the assessment and how they will impact the women's program at Project Inform.
Interviews were conducted with women living with HIV, including women who use Project Inform's services such as the hotline, key staff from community-based agencies serving positive women around the country, women living with HIV and Project Inform staff and volunteers. The survey included questions about where women get treatment information, challenges women may face in getting or understanding treatment information and medical issues that women living with HIV experience. Twenty-five interviews were completed and included women from New Jersey, DC, Georgia, California, Texas, Connecticut, Mississippi, Louisiana, South Carolina, and Maryland.
HIV Treatment Information
Survey participants reported that most women receive HIV treatment information from newsletters, doctors, nurses, case managers, the Internet, AIDS service organizations and/or peers. Most expressed that they learn from both written (e.g., fact sheets) and verbal (e.g., workshops) information. Participants reported, however, that some women living with HIV experience challenges to using HIV-related information. Some of them include a lack of information in languages other than English, a lack of information that is less technical or medically advanced and difficulties of getting and using information when a woman is incarcerated.
Medicaid, Medicare, AIDS Drug Assistance Programs (ADAPs) and private health insurance were reported as being the primary sources of payment for women's HIV care and treatment. Community clinics, infectious disease clinics in hospitals, emergency rooms and private doctor's offices were the locations that most women appear to be getting healthcare. As with treatment information, the survey participants also identified barriers that stand in the way of some women receiving optimal care. These included transportation problems, language barriers, doctors/nurses not explaining care plans sufficiently, and discomfort or embarrassment over not knowing how to ask questions.
Living With HIV
People reported a wide ranging list of issues that they felt had a major impact on the well-being of women living with HIV. These included inadequate housing; low income; taking care of a family while managing one's own health; stigma, difficulties and risks of disclosure; hepatitis C and gynecological concerns. Concerns about HIV treatment were primarily about side effects, body image changes, and long-term safety of therapy.
What Can Project Inform Do to Better Serve Women?
Overall, most people interviewed suggested that Project Inform's women's program was a useful and needed resource for women living with HIV in the United States. In general people felt that it should focus efforts in the areas of community education and advocacy for women living with HIV. For example, one participant felt that the program could develop education workshops on treatment and concerns for women living with HIV. Finally, the newsletter WISE Words
was seen as a valuable and resourceful publication!
What Does This Mean for Project Inform?
The needs assessment affirmed the efforts Project Inform has made to serve women living with HIV. These include:
- Project Inform's national hotline that provides treatment and care information and support;
- Project Access, which provides healthcare access support;
- regional town meetings for people living with HIV and provider trainings;
- publications, including WISE Words and PI Perspective; and,
- policy activities that have a particular focus on federal healthcare programs such as Medicaid, Medicare and ADAP, all of which women reported using in the needs assessment.
The outcome of the needs assessment also sheds light on new directions that Project Inform will take to improve services to women living with HIV. Of note, the importance of education and advocacy for women with HIV was repeatedly identified as areas of increased need and attention. More education programs that are for, by and about women were a clearly identified unmet need. In addition, many spoke of the need to build a national advocacy voice for women and support women to be advocates for themselves, their families and their community. In 2004, Project Inform will work to further strengthen these efforts.
It's Project Inform's hope that this process will not only continue to build a solid foundation for the women's program at Project Inform but also help to create a voice for women living with HIV/AIDS. In addition, continued input and feedback is critically important. The needs assessment is a continuing and ongoing process, so if you would like to participate please call and lend your insights and ideas! You can contact Shalini Eddens at 415-558-8669 x205 or email at firstname.lastname@example.org.
Keep your eyes and ears open for more news and updates as the process continues.
Back to the Project Inform WISE Words December 2003 contents page.