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

Sarah E. Stutterheim, Iris Shiripinda, Arjan E. R. Bos, John B. Pryor, Marijn de Bruin, Jeannine F. J. B. Nellen, Gerjo Kok, Jan M. Prins, Herman P. Schaalma

Research output: Contribution to journalArticle

29 Citations (Scopus)

Abstract

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.
Original languageEnglish
Pages (from-to)195-205
Number of pages11
JournalAIDS Care
Volume23
Issue number2
Early online date22 Jan 2011
DOIs
Publication statusPublished - Feb 2011

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stigmatization
Disclosure
Netherlands
HIV
Stereotyping
shame
costs
diaspora
caregiver
social support
counseling
well-being
anxiety
interaction
Cost-Benefit Analysis
health
community
experience
Financial Support
Shame

Keywords

  • adolescent
  • adult
  • African continental ancestry group
  • aged
  • attitude to health
  • Caribbean region
  • family
  • female
  • HIV infections
  • humans
  • male
  • middle aged
  • Netherlands
  • prejudice
  • privacy
  • shame
  • social isolation
  • stereotyping
  • truth disclosure
  • young adult

Cite this

Stutterheim, S. E., Shiripinda, I., Bos, A. E. R., Pryor, J. B., de Bruin, M., Nellen, J. F. J. B., ... Schaalma, H. P. (2011). HIV status disclosure among HIV-positive African and Afro-Caribbean people in the Netherlands. AIDS Care, 23(2), 195-205. https://doi.org/10.1080/09540121.2010.498873

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

In: AIDS Care, Vol. 23, No. 2, 02.2011, p. 195-205.

Research output: Contribution to journalArticle

Stutterheim, SE, Shiripinda, I, Bos, AER, Pryor, JB, de Bruin, M, Nellen, JFJB, Kok, G, Prins, JM & Schaalma, HP 2011, 'HIV status disclosure among HIV-positive African and Afro-Caribbean people in the Netherlands', AIDS Care, vol. 23, no. 2, pp. 195-205. https://doi.org/10.1080/09540121.2010.498873
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. / HIV status disclosure among HIV-positive African and Afro-Caribbean people in the Netherlands. In: AIDS Care. 2011 ; Vol. 23, No. 2. pp. 195-205.
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abstract = "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.",
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