Fighting Stigma from Different Perspectives at the Chiva Conference

At the Chiva Annual Conference on Friday 15 March, we were lucky to have several eminent speakers who highlighted the need for collaborative efforts to combat HIV stigma, emphasising the role of research, storytelling, and open communication to support those affected by HIV.

Dr Catherine Dodds, Senior Lecturer in Public Policy University of Bristol, presented on: How research has played a role in helping to define HIV Stigma

Dr Dodds spoke about how definitions matter – asking the question what HIV stigma means to us? Recognising that definitions mean different things to different people.

On an individual level, HIV stigma refers to irrational or negative attitudes, behaviours, and judgments towards people living with or at risk of HIV.

The recent Positive Voices survey is an example of ‘Researching down’ which reveals a lot about individual experiences of HIV stigma and discrimination. Positive Voices enables an understanding of how stigma may be experienced by different groups, for example younger people were more likely to report feeling ashamed of their HIV and also feel reluctant to access wider health care due to fears of others knowing about their HIV.

Another example of ‘Researching down’ is the National AIDS Trust’s research into Public knowledge and attitudes which helps us to understand public perceptions and knowledge of HIV in detail, including differences across audiences and demographics. Findings can be used to tackle HIV stigma at societal level.

Thinking about a systems approach, HIV stigma operates where culture, power and difference collide. It strengthens many boundaries of inequality.

The term ‘Researching up’ means investigating these systems and procedures that enable various forms of discrimination (racism, homophobia, transphobia, sexism, ableism, xenophobia and social exclusion of many kinds) that all underpin and are reinforced by HIV stigma.

‘Researching up’ helps to develop, implement and evaluate the impact of regulations, policies and laws that better enable equality (including but not limited only to HIV).

An example of ‘Researching up’ includes the Community Audit of Risk Assessments (CARA) project by the University of Bristol, researching whether people working in places with medium/high risk of bodily fluid exposure use appropriate and updated Blood-borne viruses (BBVs) safety protocols.

This can help understand why out of date perceptions of BBVs persist in industries such as piercing and tattooing industries, and what are the key opportunities for change, such as updating policy and practice.

Dr. Dodds emphasised the need for a comprehensive, intersectional approach to combat stigma, encouraging attendees to consider how they can contribute to this effort.

  • ‘Where do we see culture, power and difference collide?’
  • ‘How might this connect with the HIV stigma that maintains inequality within key populations?’
  • ‘Who might I collaborate with to find out more, collaboratively research, and then enact change?’

Angelina Namiba, Memory Sachikonye and Rebecca Mbewe, introduced their book, “Our Stories Told By Us,” which features 40 narratives of African individuals living with HIV.

The five co-authors, who are all women openly living with HIV, originally met at a support group called ZZUK. During the Covid pandemic they developed the idea of creating a book.

The book aims to empower its contributors by allowing them to shape their own narrative and challenge negative stereotypes. It was very important to the authors that all contributors used their real names and photos with the aim of addressing stigma.

Charity Nyirenda created the beautiful Artwork for the book, representing stories about troubles, grief and loss but also activism and hope for the future.

The book was launched in May 2023 with roadshows around the country aiming to empower other people living with HIV by showing there is life after diagnosis. It is intended to reignite conversations about HIV and acts as a tool to help people talk about HIV in their families and communities. 

Katie Warburton, Senior Lecturer in Children and Young People’s Nursing at the University of Central Lancashire presented on: Naming HIV to children, removing stigma and instilling best practice

Katie’s talk started with a reminder that the Chiva naming statement (2016) stipulates that children should know about their HIV by the age of nine. Subsequent audits and practice experience illustrates that this is still not yet happening in many parts of the UK.

The SKETCH study (Stories we need to Know about the Experiences of Telling Children about their HIV diagnosis) used an arts-based narrative inquiry into the stories of young people and parents who have experienced the process of being told or of telling a child their HIV diagnosis. The study involved 16 young people living with perinatally acquired HIV and 10 parents living with HIV.

Many creative pieces developed in the SKETCH study illustrated hiding, e.g. use of masks and boxes.

Use of words was found to impact on children and how they interpreted particular information. Children are predominantly concrete thinkers up to around 11 years of age. It’s important to avoid anything abstract such as ‘goodies/baddies’ or ‘bugs’. Children have described thinking bugs were crawling inside them and trying to wash away germs.

Katie gave examples of ongoing experiences of stigma that young people have experienced, including in schools where staff and pupils’ knowledge of HIV was incorrect. If HIV is not talked about at home or kept secret from family members this exacerbates the self-stigma that children feel.

Barriers in naming HIV were found to include stigma, fear and parental guilt.

Advantages for children who had HIV named to them at an early age were:

  • Improved adherence to medication
  • Improved self-esteem
  • Better trust
  • Reduced self-stigma and confidence in sharing status.
  • Naming HIV early reduces the frustration that young people might feel if they are lied to for a long time.

Parents fear the process of telling their child but feel relieved once they do know. It can also reduce risk of parental depression when conversations about HIV can happen at home and family relationships are better.

Healthcare professionals can support families with early naming through open discussions in clinics, but need resources to with this practice.

The study shows the need for: Open communication; Clear and consistent language/word choices; Support for parents; Appropriate resources for professionals, children and parents to enable confident discussions in clinics and at home.