To evaluate care provided to women living with HIV in São Paulo, Brazil, based on their own experiences, patients from HIV/AIDS reference clinics answered a questionnaire on circumstances of HIV testing, health personnel's attitudes at diagnosis, adherence to follow-up, services provided by care centers and access to laboratory monitoring. From September 1999 to February 2000, 1,068 women were interviewed. Most had over 8 years of education and reported having regular sexual partners, being mothers and family caregivers. They were diagnosed as HIV-infected for 4.36 +/- 3.15 years. The majority had been referred to testing without counseling. Post-test counseling was provided depending on the testing center. Neither pre-test nor post-test counseling were associated to time since diagnosis. Some patients reported having felt indifference, discrimination or criticism at diagnosis, depending on where testing occurred. Compliance to medical follow-up was associated to adherence to antiretrovirals and to shorter time since diagnosis, but not with having a primary caregiver or with commuting time to the care center. Psychological support, nutrition care and oral health were women's less addressed needs. Access to gynecological care was associated with counseling on mother-to-child transmission and on safe sex. Access to CD4+ cell counts and HIV viral loads was concordant with guidelines, but the understanding of their meaning was incomplete. We conclude that women living with HIV/AIDS in São Paulo, Brazil have limited HIV risk perception and unmet care needs. Better training of professionals in charge of diagnosis and integrating women's health and family-planning actions to AIDS programs may enhance care.
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