Health-information needs of HIV-positive adults in Latin America and the Caribbean: an integrative review of the literature

Abstract

An assessment of information needs is essential for care planning for patients living with chronic diseases such as human immunodeficiency virus (HIV). The extent to which these assessments have been conducted in Latin America and the Caribbean (LAC) is unknown. The purpose of this study was, therefore, to identify, evaluate, and summarize what research has been conducted to examine patient perceptions of their health-information needs among adults living with HIV in LAC. Using an integrative review methodology, a literature search of six databases was conducted in April and May 2015. Inclusion criteria were peer-reviewed articles published in English or Spanish that assessed the information needs of HIV-positive patients living in LAC. The quality of included articles was assessed and relevant characteristics of each article were extracted, compared, and presented. Searches returned 1885 citations, 11 of which met inclusion criteria. Studies included were conducted in 8 of 33 countries, used multiple research designs, demonstrated varying needs between populations, and found numerous unmet information needs. Information about HIV in general, methods of infection transmission, antiretroviral medications, other sexually transmitted diseases, and effective coping mechanisms were the most commonly mentioned needs. Healthcare providers were the largest and most reliable source of health information for many participants and it was emphasized that in order for health education to be effective, programs should include both individual and group components. Patients indicated that they may have difficulty processing and using information through an incorrect understanding of medications, not changing risk behaviors, and by stating that information can be overwhelming or poorly communicated. Further research on information needs is warranted so that healthcare providers and organizations may provide the information patients need to appropriately manage their health.

Priority Topics for Health Education to Support HIV Self‐Management in Limited‐Resource Settings

“…A detailed report of the literature review can be found elsewhere (Stonbraker & Larson, ), but in summary, 11 articles from 8 out of 33 countries met inclusion criteria. From these studies, the predominant information needs of PLWH in Latin America and the Caribbean were identified as information about HIV in general (including symptoms, illness trajectory, and laboratory results), more knowledge about HIV medications, and information about other sexually transmitted infections or about secondary (opportunistic) infections.…”

“…From these studies, the predominant information needs of PLWH in Latin America and the Caribbean were identified as information about HIV in general (including symptoms, illness trajectory, and laboratory results), more knowledge about HIV medications, and information about other sexually transmitted infections or about secondary (opportunistic) infections. How to modify one's lifestyle following a positive diagnosis, methods of effective communication with providers and friends or family members, and effective coping mechanisms were also identified as information needs (Stonbraker & Larson, ). Additional searches conducted for this study did not find any new publications on the information needs of PLWH.…”

“…Three data sources were included in data sources triangulation for this study: (a) perspectives of PLWH, (b) perspectives of healthcare providers who provide clinical services to PLWH, and (c) the scientific literature. Data representing the perspectives of PLWH and scientific literature review were collected during preliminary studies (Stonbraker & Larson, ; Stonbraker et al., ). These three data sources were selected for data sources triangulation because, in order to determine what information PLWH need to facilitate effective self‐management, input from both patients and healthcare providers must be included, as each may have varying perspectives regarding what information is needed and when (Hartzler & Pratt, ).…”

“…An integrative literature review was conducted to identify published literature that reported health information needs of PLWH in Latin America or the Caribbean. The full methodology of this study is reported elsewhere (Stonbraker & Larson, ), but to summarize, English‐ and Spanish‐language searches were conducted in six databases to identify studies that explored or measured patients’ perspectives on their health information needs. The quality of each included article was assessed, and relevant characteristics were extracted and compared (Stonbraker & Larson, ).…”

“…The full methodology of this study is reported elsewhere (Stonbraker & Larson, ), but to summarize, English‐ and Spanish‐language searches were conducted in six databases to identify studies that explored or measured patients’ perspectives on their health information needs. The quality of each included article was assessed, and relevant characteristics were extracted and compared (Stonbraker & Larson, ). For the current study, the literature was reviewed to ensure that no new articles had been published since initial searches.…”