HIV status disclosure among HIV-positive African and Afro-Caribbean people in the Netherlands

• Published in: AIDS care Vol. 23; no. 2; pp. 195 - 205
• Main Authors: Stutterheim, Sarah E., Shiripinda, Iris, Bos, Arjan E.R., Pryor, John B., de Bruin, Marijn, Nellen, Jeannine F.J.B., Kok, Gerjo, Prins, Jan M., Schaalma, Herman P.
• Format: Journal Article
• Language: English
• Published: Abingdon Taylor & Francis Group 01-02-2011; Taylor & Francis; Taylor & Francis Ltd
• Subjects: Acquired Immune Deficiency Syndrome; Adolescent; Adult; African Continental Ancestry Group - ethnology; African Continental Ancestry Group - psychology; African-Americans; Africans; Aged; AIDS/HIV; Attitude to Health; Biological and medical sciences; Black people; Blacks; Caregivers; Caribbean Region - ethnology; close relationships; concealable stigma; Cost benefit analysis; Cultural Sensitivity; Culture; Decisions; Disclosure; Ethnic minorities; Family - psychology; Female; Health costs; Health promotion; HIV; HIV Infections - ethnology; HIV Infections - psychology; HIV/AIDS; Human immunodeficiency virus; Human viral diseases; Humans; Infectious diseases; injection-drug users; Intervention; Male; Medical sciences; Mental health; Middle Aged; Netherlands; Prejudice; Privacy - psychology; psychological distress; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Public health; Self Disclosure; serostatus disclosure; sexual partners; Shame; Social Isolation - psychology; Social psychiatry. Ethnopsychiatry; Social support; Sociocultural environment; Stereotyping; Stigma; Stigmatization; Truth Disclosure; Viral diseases; Viral diseases of the lymphoid tissue and the blood. Aids; Well Being; women; Young Adult; Netherlands; Europe; Caribbean Region; Africa; Social environment; Stigma; Mental health; Motivation; Cultural environment; Minority; Public health; Human; HIV/AIDS; Immunopathology; disclosure; Decision making; Retroviridae; AIDS; Immune deficiency; Lentivirus; African Caribbean; ethnic minorities; Ethnic group; African; Infection; Virus; Sociodemographic factor; Viral disease; culture; Self disclosure; Human immunodeficiency virus
• ISSN: 0954-0121; 1360-0451
• DOI: 10.1080/09540121.2010.498873

HIV status disclosure is often characterized as a dilemma. On the one hand, disclosure can promote health, social support, and psychological well-being. On the other, disclosure can lead to stigmatization, rejection, and other negative social interactions. Previous research has shown that HIV status disclosure is a reasoned process whereby the costs and benefits to oneself and to others are weighed. As such, understanding disclosure requires understanding the reasons for and against disclosure employed by people living with HIV (PLWH). In this study, disclosure among a population disproportionately affected by HIV in the Netherlands, namely African and Afro-Caribbean diaspora, was investigated. Reasons for nondisclosure were fear of stigmatization, previous negative experiences with disclosure, having observed the stigmatization of other PLWH, shame, the desire to protect others - particularly one's children and family - from stigmatization by association and/or worrying, and the belief that one's HIV status is a private matter. Participants reported disclosing because they were in a close and supportive relationship, disclosure led to emotional release, disclosure could lead to emotional or financial support, they felt a perceived duty to inform, and they had a desire to educate others about sexual risk-taking. The findings suggest that stigma plays an important role in disclosure decisions among these populations. They further point to a need for HIV-related stigma reduction interventions in African and Afro-Caribbean communities and culturally sensitive counseling for PLWH whereby caregivers do not automatically assume that disclosure is best but rather provide a safe environment in which the costs and benefits of disclosure can be weighed and strategies for disclosure can be developed, if perceived as beneficial by PLWH.