Disclosure in Times of ART: A Relational Analysis of Social Practices

The reach of HIV counseling and testing has grown rapidly since the 2000s; particularly since 2007 when provider-initiated counseling and testing was implemented alongside voluntary counseling and testing and testing for the prevention of motherto- child transmission. Nevertheless; we still know little about the attendant practices of disclosing HIV-positive status. Persistently high rates of non-disclosure raise difficult ethical; public health and human rights issues. The articles in this special issue show that disclosure practices in Africa not only follow the public health rationality but are shaped by fears of stigma that favor secrecy. They show how practices of disclosure are embedded in social relationships. More specifically; they present disclosure practices at the intersection of five social spaces: international norms; national legislation and public health recommendations; household and family settings; couples' relationships; parental relationships; and relationships between health workers and PLWHA. The authors describe how people pursue strategies of disclosure in one or more of these social spaces; which sometimes allows them to avoid barriers (for instance when they choose to disclose only partially to certain 'significant others' in the household). One important finding is that counselors often do not support PLWHA to disclose their HIV status. Counselors themselves may be influenced by divergent logics and experience conflicts in values; they may also lack sufficient knowledge and skills to discuss sensitive issues based on rapidly changing medical data and public health recommendations

Disclosure of HIV Status between Parents and Children in Uganda in the Context of Greater Access to Treatment

While disclosure of HIV sero-status is encouraged in the management of the HIV and AIDS epidemic; it remains a challenge; especially among family members. This article examines the moral dilemmas and pragmatic incentives surrounding disclosure of HIV status in contemporary Uganda. Our findings are based on 12 in-depth interviews; 2 focus-group discussions; 6 key informant interviews with AIDS activists; and open-ended responses derived from 148 HIV-positive persons in a quantitative survey. The study was conducted in 2008-2009 in Kampala; Mpigi; and Soroti districts in Uganda. We found both parents and adult children facing dilemmas in disclosure; whether it was parents revealing their own HIV status to their children or the status of their perinatally infected children; or young people infected through sexual intercourse telling their parents. For both groups; there is fear of blame; stigma; discrimination; and shame and guilt related to unsafe sex; while young people also fear loss of privileges. On the other hand; there are practical imperatives for disclosure in terms of gaining access to care; treatment; and material resources. Faced with these dilemmas; HIV-positive people and their families require professional counselling to help them work through the emotional challenges encountered and identify mechanisms of support and coping

The Duty to Disclose in Kenyan Health Facilities: a Qualitative Investigation of HIV Disclosure in Everyday Practice

Disclosure of HIV status is routinely promoted as a public health measure to prevent transmission and enhance treatment adherence support. While studies show a range of positive and negative outcomes associated with disclosure; it has also been documented that disclosing is a challenging and ongoing process. This article aims to describe the role of health-care workers in Central and Nairobi provinces in Kenya in facilitating disclosure in the contexts of voluntary counselling and testing and provider-initiated testing and counselling and includes a discussion on how participants perceive and experience disclosure as a result. We draw on in-depth qualitative research carried out in 2008-2009 among people living with HIV (PLHIV) and the health workers who provide care to them. Our findings suggest that in everyday practice; there are three models of disclosure at work: (1) voluntary-consented disclosure; in alignment with international guidelines; (2) involuntary; non-consensual disclosure; which may be either intentional or accidental; and (3) obligatory disclosure; which occurs when PLHIV are forced to disclose to access services at health facilities. Health-care workers were often caught between the three models and struggled with the competing demands of promoting prevention; adherence; and confidentiality. Findings indicate that as national and global policies shift to normalize HIV testing as routine in a range of clinical settings; greater effort must be made to define suitable best practices that balance the human rights and the public health perspectives in relation to disclosure