Research spotlight: Nicola Jones
PhD student and alumna of the International Disaster Management MSc at HCRI, Nicola Jones, discusses stigma narratives in HIV public health policies, her work with the Terrence Higgins Trust, and researching HIV health services and disaster relief aid in Malawi.
How did your research interest in stigma develop?
My master’s dissertation examined how chronic health conditions are managed alongside more acute health needs during disasters. In 2015, I conducted research in Mocuba, Mozambique, in the aftermath of a flood disaster. Focusing on HIV, I found that whilst outreach teams provided HIV testing and treatment, stigma prevented many people from accessing those services. This sparked my interest in researching stigma, specifically how it is shaped by the surrounding context and its implications for healthcare access.
My PhD aims to develop a novel theory of stigma, which can be applied to public health and healthcare access. Specifically, I am interested in how social processes of power, identity, and space shape stigma in different contexts. Applying a stigma lens to HIV public health policies has revealed that stigma is produced through sexual health campaigns, which focus heavily on individual responsibility by mobilising narratives of risk and blame. Examining these narratives in a disaster context highlighted that one’s identity and surrounding environment shapes how stigma narratives are interpreted, expressed, and experienced.
Can you tell us about your experience of field research in Lilongwe, Malawi?
Conducting fieldwork in Lilongwe was an eye-opening experience, and it completely changed how I saw my research and my understanding of public health. I spent six months conducting 116 interviews with a diverse group of participants, including people living with HIV, HIV-negative people, sex workers, men who have sex with men, trans women, and healthcare providers. I wanted to gain an insight into stigma from many different perspectives to understand how it impacted people’s lives differently. Some stories were harrowing and upsetting, whilst others were told through humour or a commitment to activism and stigma reduction. The most important thing I learned from this experience is that stigma is deeply personal, and it cannot be eradicated without hearing the voices of those it affects most.
Overall, fieldwork was an exciting but challenging opportunity and one I’ll never forget. I met many inspirational people who made me feel so welcome. Malawi certainly lives up to its reputation as the “warm heart of Africa”. Malawi is also a beautiful country, and I made sure I took time out of my research schedule to go hiking in the mountains and fully appreciate my surroundings. A personal highlight for me was summiting Sapitwa Peak on Mount Mulanje.
How does your work at the Terrence Higgins Trust intersect with your PhD research?
In summer 2019, I changed my PhD to part-time and began working with the Terrence Higgins Trust as a Health Promotion Specialist in Oxfordshire. My responsibilities include designing and delivering sexual health outreach interventions to engage with populations who are disproportionately affected by HIV and sexual health issues or those who face barriers in accessing services. Specifically, I work with young people and black African and Caribbean communities.
The understanding of stigma I have gained during my PhD has significantly influenced how I approach health promotion. I am acutely aware of the language I use when talking about sexual health. Many campaigns and policies position sexual health within a risk narrative, fuelling a stigma of risk-taking and ‘irresponsibility’, with little consideration for the competing priorities in a person’s life, which may prevent them from following public health guidance.
The Terrence Higgins Trust is at the forefront of challenging HIV-related stigma. For example, the “Can’t Pass It On” campaign informs the public that effective HIV treatment now means people living with HIV cannot transmit the virus to others. My role within this organisation has provided me with excellent opportunities to disseminate my research and influence public health approaches to HIV. For World AIDS Day 2020, I hosted a public Zoom talk about my research findings and, more recently, delivered a presentation on stigma to clinical staff based in Oxfordshire’s sexual health services.
What impact has your research had on those affected by HIV and the wider community?
I am currently drafting a report summarising my findings for the Ministry of Health in Malawi. This is part of my agreement with Malawi’s research ethics board. The report includes key recommendations for addressing stigma and improving access to HIV health services and disaster relief aid.
A little closer to home, I have used my research to propose an alternative approach to sexual health promotion among black African and Caribbean women in Oxfordshire. Public health approaches in the UK largely focus on behavioural change campaigns, delivered through a top-down approach, which positions those implementing the programmes as ‘experts’ and those whom they intend to reach as the ‘audience’. Furthermore, behavioural-focused campaigns overlook structural barriers to sexual health services and place the responsibility for HIV prevention and improved sexual health directly onto the individual whilst simultaneously erasing their voices in defining their own needs. Alternatively, I proposed a collaborative project with African Families in the UK, which focuses on uncovering and responding to the structural barriers that prevent black African and Caribbean women from accessing sexual health services. Oxfordshire County Council has awarded us funding to implement the project. Our goal is to develop culturally appropriate, multilingual health promotion videos that have been created from the bottom up, recognising that black African and Caribbean women are the experts in their own lives.
What are your future research plans?
I plan to continue my research on stigma in the context of public health. In particular, I intend to apply my proposed stigma theory to a UK context and draw attention to how stigma is embedded within social processes of power, identity, and space. Additionally, a prominent research gap that emerged in my data from Lilongwe was the dearth of knowledge of how stigma affects heterosexual men and their capacity to access healthcare. In Malawi, although HIV prevalence rates are higher among women and sexual and gender minorities, heterosexual men are less likely to access HIV services and more likely to be diagnosed at a late stage of HIV infection. Yet, their specific needs and experiences have largely been overlooked in both research and policy.
You can find out more about Nicola’s research on HCRI’s website.