Stigma was originally conceptualised as the creation of a ‘spoiled identity’, which arises from the gap between how a person sees themselves and how they are seen by others. It is seen as a construct based on psychological, social and societal factors. It refers to an extreme disapproval of a person or group based on a characteristic that serves to distinguish them from other members of society. Fear of stigma and discrimination is a leading contributor to poor health outcomes for people living with or affected by HIV.
HIV-related stigma is widely reported and feared by people living with HIV, and refers to any form of prejudice, negative attitude, discrimination or abuse directed at people living with HIV because of their HIV status. This stigma may be in addition to pre-existing stigma based on actual or perceived membership of different social groups (e.g. gender identity, religion, age, class, ethnicity, sexuality).
The Equality Act applies in England, Scotland and Wales, and serves as protection against discrimination, across all health and social care settings. However, the findings of The People Living with HIV Stigma Survey UK 2015 show that in the preceding 12 months, one in seven (13%) reported hearing negative comments from a healthcare worker about themselves or other people living with HIV. The findings also show about one-third worried about being treated differently to other patients at their general or dental practice, and 5% felt treatment was refused or delayed across all healthcare settings because of their HIV status.
HIV-associated stigma has many negative effects on the lives of people living with HIV, undermining confidence and acting as a barrier to service uptake and utilisation. There is good evidence that stigma is associated with reduced engagement with healthcare services. People living with HIV will differ in their experience of stigma, historically, geographically and in relation to social context. Appropriate peer support enables people living with HIV to develop confidence and gain information and skills from others in an easily identifiable and applicable way, which is critically important for all other aspects of self-management.
It is critical to acknowledge that people living with HIV may also be faced with stigma based on other personal demographics that could be acting as compounding factors to their psychological well-being or health behaviours, in particular trans people and people who use drugs. For people who are engaging with services, care must be taken to consider the life stage they are in, which may influence their levels of resilience or stress.
All people using the NHS have the right to expect that their care is delivered in a safe environment, where they are treated with dignity and respect, and without fear of discrimination. Staff involved in delivery of outpatient HIV care should be mindful of the impact of HIV-related stigma and discrimination and able to support patients facing these issues, especially when this affects uptake or access to health and social care outside the HIV clinic.