HIV-positive people of Caribbean descent are keenly aware of HIV-related stigma in their communities, and believe it is based on “a particularly Caribbean cocktail of fear of contamination, homophobia, religious beliefs and ignorance”, reports a study published online this month in Social Science and Medicine.
There have been sharp increases in the numbers of HIV diagnoses among Caribbean people in the UK in the recent years, and in 2006, 3.2% of new diagnoses were in this group. However their experiences of HIV-related stigma and discrimination have not, until now, been researched.
The LIVITY study is the first in-depth study of HIV among black Caribbean people in the UK, and includes quantitative research with 250 HIV-positive people, as well as further qualitative interviews with 25 members of the larger sample.
The findings on stigma are drawn from these in-depth interviews. Respondents were asked to describe their knowledge of HIV-related stigma prior to diagnosis; their reactions to their diagnosis; decision-making around disclosure of HIV status; stigma and discrimination they had experienced; how they felt stigma affected their lives; and how well they believed they were coping with their illness.
Of the 25 interviewees, ten were gay or bisexual men, five were heterosexual men, and ten were heterosexual women. Two thirds were born in the Caribbean (notably Jamaica), and all of those born in the UK had at least one Caribbean parent or grandparent.
Stigma can be defined as: “A strong feeling in society that being in a particular situation or having a particular illness is something to be ashamed of” (Longman Dictionary of Contemporary English). Moreover, researchers have distinguished between “felt stigma” and “enacted stigma”. In this case, “felt stigma” refers to people with HIV’s own feelings about HIV, and their expectations of how other people will react to them; while “enacted stigma” refers to actual experiences of stigma and discrimination that have taken place.
The interviews confirmed that as people experience a great deal of felt stigma, they use a number of avoidance strategies (such as hiding their HIV status), with the result that tangible experiences of enacted stigma were less common.
Avoidance strategies included making careful assessments of the likely reaction of people they might disclose to, and refraining from starting or committing to sexual relationships if that would necessitate disclosure. Moreover, a number of participants had withdrawn from social activities for a period, out of shame and fear of discovery.
Fear of contamination
When asked to describe the reasons for stigma, all of the HIV-positive respondents mentioned others’ fear of catching the disease, based on perceptions of the ease of transmission.
Respondents often expected to be ostracised, and were acutely aware that people with HIV could be treated like “lepers” who are responsible for passing on disease.
Moreover, some respondents had internalised stigma, for example not wishing to kiss family members or share cups with them. Experiences of enacted stigma in the family included excessive cleansing of household objects and being excluded from relatives’ homes. Several respondents had experienced discrimination in healthcare settings, including physical examinations not being conducted.
The association of HIV with immoral behaviour
HIV was associated with sexual behaviour that was regarded as immoral, including promiscuity, prostitution and, above all, homosexuality. Religion had a strong influence on the perception that “sinners” contracted HIV as a form of punishment.
Women born in the Caribbean were particularly aware of morality tales told in church, and often mentioned the use of words like “dirty”. The researchers suggest that “a dirty person is someone who infringes moral boundaries, is thus contaminated and can contaminate others”.
Gay and bisexual men were also particularly worried about being blamed for their illness, and a number feared having their sexuality revealed. Several respondents had experienced depression, alcoholism and thoughts of suicide, as a consequence of the risk of social vilification.
Enacted stigma related to immorality included malicious disclosure, gossip and verbal abuse. Caribbean born respondents reported cases when other people with HIV had been excluded from neighbourhoods, had their homes burned down, or even been killed.
The HIV-positive respondents believed that stigma had its roots in ignorance, which was often blamed on the influence of religion, lack of health promotion activities and the parents’ refusal to discuss sexual issues with children. Several respondents also thought that there was a refusal to “take time to understand”, which was felt to be a specifically Caribbean phenomenon. As a consequence, respondents perceived there to be greater stigma in their communities than in other British communities.
The authors conclude that stigma impacts on people with HIV’s lives in a variety of ways: emotionally, mentally, financially, socially and physically. They urge the creation of interventions to specifically address stigma and discrimination in the UK’s Caribbean population, but warn that education alone is unlikely to be insufficient. Tackling stigma, they say, “requires ‘cultural work’ to address deeply entrenched notions of sexuality and understandings of HIV transmission and treatment”.
Anderson M et al. HIV/AIDS-related stigma and discrimination: accounts of HIV-positive Caribbean people in the United Kingdom. Social Science and Medicine (online edition), 2008.