The Right to Know and the Right Not to Tell: The Ethics of Disclosure of HIV Status (original) (raw)

SOCIAL CONTEXT OF HIV STATUS DISCLOSURE BY PEOPLE LIVING WITH HIV IN TUREY

Hacettepe Sosyoloji E-Dergi, 2014

Abstract Based on qualitative interviews with people living with HIV (PLHIV), this paper examines the motives and strategies for disclosure and non-disclosure of HIV status by PLHIV in Turkey. As an area at the intersection of human rights and public health, disclosure is discussed not only in relation with social-psychological and health-related needs but also around cultural and legal frameworks behind stigmatisation. The discrepancy between the strong motivations for disclosure expressed by the participants and the felt requirement for concealment due to fear of discrimination is an important source of discomfort for PLHIV. This situation and possible solutions are discussed through a critical approach to existing conceptualizations about disclosure. The need for a comprehensive national HIV/AIDS policy, comprising systematic counselling, testing and partner notification services is emphasized. Özet Bu çalışma, HIV ile yaşayan bireylerle gerçekleştirilmiş niteliksel araştırmanın sonuçlarına dayanarak, HIV tanısını başkalarıyla paylaşıp paylaşmamayla ilgili motivasyonları ve stratejileri incelemektedir. İnsan hakları ve halk sağlığı yaklaşımlarının kesişim noktasında yer alan, HIV tanısının açıklanması konusu, sosyal-psikolojik ve sağlıkla ilgili ihtiyaçlar kadar, damgalanmayı biçimlendiren toplumsal ve yasal çerçeve ile ilgisi bakımından da ele alınmıştır. Katılımcıların HIV statülerini açıklamaya yönelik güçlü motivasyonları ile ayrımcılık endişesinden kaynaklanan gizlenme gerekliliği arasındaki çelişki, HIV ile yaşayanlar için önemli sorun oluşturmaktadır. Bu durum ve çözüm yolları, ilgili literatürdeki kavramsallaştırmalara eleştirel bir yaklaşımla tartışılmış ve Türkiye’de HIV/AIDS’e yönelik, danışmanlık, test ve partner bilgilendirme hizmetlerini de içeren kapsamlı bir politika gerekliliğine işaret etmiştir.

Perceived Stigma as a Contextual Barrier to Early Uptake of HIV Testing, Treatment Initiation, and Disclosure; the Case of Patients Admitted with AIDS-Related Illness in a Rural Hospital in South Africa

Healthcare

We explored the extent to which perceived HIV-related stigma influences the disclosure and concealment of HIV status to family among adult patients hospitalised for AIDS-related illness, and described reports of negative responses and enacted stigma following disclosure. We conducted interviews with a purposeful sample of 28 adult patients in a rural South African hospital. Data analysis was deductive and inductive and followed the thematic approach. We found evidence of delayed HIV diagnosis and initiation of treatment. There was delayed and selective disclosure as well as concealment of the HIV-positive status. The disclosure was delayed for months or even years. During that time, there was active concealment of the HIV status to avoid stigma from family, friends, and community. When disclosure occurred, there was selective disclosure to close family members who would keep the secret and respond favorably. Although the participants disclosed mostly to close family, some of their p...

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

AIDS and behavior, 2014

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 1,500 PLHIV in contact with CBOs using a 125-item questionnaire. A weighted multivariate logistic regression was performed. Among the 1,212 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 affe...