HIV serostatus disclosure: development and validation of indicators considering target and modality. Results from a community-based research in 5 countries

HIV serostatus disclosure is a complex challenge for persons living with HIV (PLHIV). Despite its beneficial effects, it can also lead to stigmatization and rejection. The current lack of multi-dimensional measurement tools impede an in-depth understanding of the dynamic of disclosure. To develop and validate complex measures of serostatus disclosure. This international community based research study was performed by joint research teams (researchers/community based organizations (CBO)) in five countries (Democratic Republic of the Congo, Ecuador, Mali, Morocco and Romania). A convenience sample of 1500 people living with HIV (PLHIV) in contact with local CBO were recruited in 2011 (300 in each country). Face-to-face interviews were performed using a 125-item questionnaire covering HIV status disclosure to 23 potential disclosure targets and related issues (including personal history with HIV, people's reaction to disclosure, sexuality). A principal component analysis and a hierarchical cluster analysis were performed, in order to identify the main components of HIV disclosure, create measures and classify participants into profiles. Patterns of disclosure were summarized using two main measures: direct and indirect disclosure. Disclosure to sexual partners, whether steady or not, was different from patterns of disclosure to other targets. Among the participants, three profiles emerged – labelled Restricted disclosure, Mainly indirect disclosure and Mainly direct disclosure, respectively representing 61%, 13% and 26% of the total sample. The profiles were associated with different aspects of PLHIV's lives, including self-efficacy, functional limitations and social exclusion. Patterns varied across the five studied countries. Results suggest that multi-dimensional constructs should be used to measure disclosure in order to improve understanding of the disclosure process. •“Partages” is an international community-based participatory study.•Serostatus disclosure is a central topic in HIV-related research.•Using a PCA-based approach, we developed measures considering target and modality.•We identified three main disclosure profiles using hierarchical cluster analysis.•Country-specific patterns of disclosure profiles appeared.