Improving community mobilization in HIV treatment management: practical suggestions from patients in Brazil

OBJECTIVES. To describe patients’ suggestions on improving the management of antiretroviral therapy (ART) and to identify the roles that key stakeholders should play in taking responsibility for those recommendations. METHODS. This research was embedded within a national cross-sectional study on patient adherence to ART and the associated factors. A subsample of the study patients were asked to offer suggestions on how to improve daily management of ART, and their answers were analyzed using a content analysis approach. The recommendations were then interpreted in terms of who should be responsible for them, and the suggestions were organized into three levels: micro (patient), meso (health care team), and macro (researchers, policymakers, family, friends, and the general public). RESULTS. Of the 552 participants from the subsample, 60% were male, their average age was 44.1 years, and 62% were nonadherent in at least at one of three dimensions (missing doses, improper timing, or improper dosing). The categories underlying the micro level were “believing in treatment efficacy,” “being motivated,” “accepting HIV status,” and “sharing experiences with other patients.” At the meso level the suggestion categories were “more information from health care providers” and “humanization of care.” The macro level categories were “social support and actions against stigma,” “research proposals,” and “improvement of health care services.” CONCLUSIONS. Patients are influenced by the health policies, care, and support offered by health care providers, organizations, policymakers, and communities. In turn, these stakeholders develop the policies and deliver their care and support based on the responses and actions of patients. All stakeholders should work together to engage, educate, and support patients in addressing ART management.