The role of shame in Human Immunodeficiency Virus (HIV) disclosure

Given the increased prevalence of the Human Immunodeficiency Virus (HIV) in the United Kingdom, it is important to examine variables associated with HIV positive individuals' disclosure of their HIV status. This cross-sectional study used both quantitative and qualitative methods to examine the role of shame and other variables in disclosure of HIV-positive status. Sixty-six participants were recruited from HIV out-patient clinics and drop-in centres of voluntary sector HIV services. All participants completed the Experience of Shame Scale as well as standard measures of anxiety and depression. Highest reported rates of HIV disclosure were to partner(s), followed by disclosure to friends, then family members. Higher levels of characterological shame were associated with increased HIV disclosure to friends, but not to partner(s) or family. Behavioural and bodily shame were not associated with HIV disclosure. The main reason reported for HIV disclosure was a perceived 'Duty to inform', 'Protecting the other person from distress' was the most commonly cited reason for not disclosing their HIV status. In the quantitative study, shame was not reported as a reason for disclosure or non-disclosure. Increased time since HIV diagnosis was associated with increased disclosure to family and friends. Men made more HIV disclosures than women to friends. Black participants and participants who had English as a second language made fewer disclosures. Focus groups and semi-structured interviews revealed that some important others in participants' lives were reported to perceive HIV as a shameful illness and for some participants shame was given as a reason for non-disclosure. Some, but not all, participants spoke about being ashamed about not having disclosed their HIV status. Participants reported both self-focussed and other-focussed reasons for disclosing or not disclosing their HIV status. The qualitative study's findings provide additional evidence for the idea that HIV-positive individuals primarily disclose to access support. The focus group and interview participants' main reported reasons for non-disclosure were protecting others from emotional distress, and avoidance of negative consequences for the self, including fear of rejection, discrimination and stigma. These findings support the consequence theory of HIV disclosure