An instrument to assess HIV-related knowledge and adjustment to HIV+ status, and their association with anti-retroviral adherence

BACKGROUND: Findings on the association between health literacy and anti-retroviral (ARV) adherence are inconsistent. Health literacy is usually operationalized with simple tests of basic literacy, but more complex conceptions of health literacy include content knowledge. People living with chronic illness also conceptualize and experience illness in ways other than biomedical or mechanistic models of disease. OBJECTIVE: There are no instruments that comprehensively assess knowledge of people living with HIV concerning HIV disease and treatment; or psychological adjustment to being HIV+. Little is known about the relationship between factual knowledge, or positive identification as HIV+, and anti-retroviral (ARV) adherence. METHODS: Formative work with in-depth semi-structured interviews, and cognitive testing, to develop a structured instrument assessing HIV-related knowledge, and personal meanings of living with HIV. Pilot administration of the instrument to a convenience sample of 101 respondents. KEY RESULTS: Respondents varied considerably in their expressed need for in-depth knowledge, the accuracy of their understanding of relevant scientific concepts and facts about ARV treatment, and psychological adjustment and acceptance of HIV+ status. Most knowledge domains were not significantly related to self-reported ARV adherence, but accurate knowledge specifically about ARV treatment was (r = 0.25, p = .02), as was an adapted version of the Need for Cognition scale (r = .256, p = .012). Negative feelings about living with HIV (r = .33, p = .0012), and medication taking (r = .276, p = .008) were significantly associated with non-adherence. CONCLUSION: The instrument may be useful in diagnosing addressable reasons for non-adherence, as a component of psychoeducational interventions, and for evaluation of such interventions.