Moving beyond stigma – how can we help to improve quality of life for people living with HIV?
How can we help to improve quality of life for people living with HIV by addressing and moving beyond stigma?
Since the introduction of antiretroviral therapy (ART), there have been rapid and dramatic declines in HIV-related illness and deaths across the world. For people who can access and receive treatment early enough to benefit, life expectancy is near normal. Being undetectable on ART means that HIV cannot be transmitted to others (U=U).
Despite these huge advances in treatment and care, studies repeatedly show that people living with HIV have poorer quality of life than the general population and particularly in relation to mental health. One of the aspects of living with HIV that continues to affect peoples’ quality of life is stigma.
What is health-related stigma?
Stigma is socially and psychologically constructed. It includes the co-occurrence of ‘labelling, stereotyping, separating, status loss and discrimination’ in a situation of power.1 When this applies in the context of health, it is known as health-related stigma.
The Health Stigma and Discrimination Framework
Until recently, frameworks designed to understand health-related stigma were focused on specific diseases and individuals (either those perpetrating or experiencing stigma). These could be useful to develop individual-level interventions to reduce stigma, but there is also a need for intervention on multiple levels (e.g., public policy, organisational, community, interpersonal and individual).
The Health Stigma and Discrimination Framework2 was developed to address this need. It emphasises the social, economic, cultural, and political forces driving stigma and purposefully avoids distinguishing between the stigmatised and the stigmatiser. In doing so it aims to challenge the ‘us and them’ distinction that is a hallmark of stigma.
Health Stigma and Discrimination Framework applied to HIV (adapted from Stangl, A.L., et al.)
How can the Health Stigma and Discrimination Framework can be used to guide the development of interventions?
The framework can be used to develop interventions at different points of the stigmatisation process for example:
Addressing drivers and facilitators of stigma such as by interventions that increase awareness, provide education and training, remove misguided safety regulations and changing laws and policies.
Addressing the manifestations of stigma for example, by providing counselling or support to address internalised stigma, increasing resilience and the ability to recognise and call out discriminatory practices, and training of staff to delivery non-discriminatory care.
Considerations for the development of interventions for HIV-related stigma
A recent review found a lack of well-designed studies evaluating interventions to combat stigma experienced by people living with HIV3. The review identified several important limitations of the literature to date. Future interventions should consider the need to:
- Include key populations affected by HIV such as migrants, transgender persons, and prisoners
- Address intersectional stigmas experienced by people living with HIV, including stigmas associated with race, gender, sexual orientation, occupation (e.g., sex work), substance abuse, other long-term conditions
- Assess the impact of stigma interventions on quality of life
- Involve people living with HIV in the development and implementation of interventions to increase their relevance and sustained impact
- Develop interventions to combat stigma in non-HIV healthcare services
Examples of campaigns to address stigma by increasing awareness include:
Respect my HIV https://life4me.plus/en/campaigns/respectmyhiv/
Tackle HIV https://tacklehiv.org/
Link, B.P., J.C., Conceptualizing stigma. Annu Rev Soc, 2001. 27: p. 363–85.
Stangl, A.L., et al., The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Med, 2019. 17(1): p. 31
Andersson, G.Z., et al., Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV, 2020. 7(2): p. e129-e140.