Feelings of regret after HIV status disclosure: prevalence, trends, and determinants

Was it a mistake to tell others that you are infected with HIV?: factors associated with regret following HIV disclosure among people living with HIV in five countries (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). Results from a community-based research.

Henry E, Bernier A, Lazar F, Matamba G, Loukid M, Bonifaz C, Diop S, Otis J, Préau M; The Partages study group. AIDS Behav. 2014 Dec 23. [Epub ahead of print]

This study examined regret following HIV serostatus disclosure and associated factors in under-investigated contexts (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). A community-based cross-sectional study was implemented by a mixed consortium [researchers/community-based organizations (CBO)]. Trained CBO members interviewed 1500 PLHIV in contact with CBOs using a 125-item questionnaire. A weighted multivariate logistic regression was performed. Among the 1212 participants included in the analysis, 290 (23.9 %) declared that disclosure was a mistake. Female gender, percentage of PLHIV's network knowing about one's seropositivity from a third party, having suffered rejection after disclosure, having suffered HIV-based discrimination at work, perceived seriousness of infection score, daily loneliness, property index and self-esteem score were independently associated with regret. Discrimination, as well as individual characteristics and skills may affect the disclosure experience. Interventions aiming at improving PLHIV skills and reducing their social isolation may facilitate the disclosure process and avoid negative consequences.

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Editor’s notes: Anticipated and perceived consequences of disclosing one’s HIV status are recognized as important drivers for HIV disclosure. This community-based study looked at the experience of disclosing one’s HIV status, and the emotions that were associated with disclosure. The study was nested within a larger cross-sectional research project. 1500 people living with HIV (PLHIV) from Ecuador, the Democratic Republic of the Congo (DRC), Mali, Romania, and Morocco were included in the study. Respondents were asked ‘Was it a mistake to tell others that you are infected with HIV?’ and to answer either ‘yes’ or ‘no.' Participants also responded to questions about the process of disclosure. Among people that had disclosed their status, some 23.9% said that it was a mistake to do so. Almost 40% of participants said that a person in their network learned about their status from a third party. More than 17% of participants responded that they faced rejection and eight percent of participants suffered discrimination at work following disclosure. But this varied greatly across countries. Factors associated with feeling regret after disclosing one’s status included being a female, perceived seriousness of HIV infection, and feeling lonely every day. This study highlights the fact that status disclosure can be emotional and stressful for people living with HIV. This suggests that people living with HIV must weigh the costs and benefits of disclosure before doing so and programmes that empower them to make informed decisions about disclosure may be beneficial. 

Africa, Europe, Latin America
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