How do power, identity, and space shape stigma? A case study of HIV-related stigma in post-flood Lilongwe, Malawi

Abstract

Approximately 40 years after HIV was first identified it remains a major global health issue. Stigma is one of the most pervasive barriers to HIV prevention and treatment. Research shows how power, identity, and space are key concepts that shape stigma. Against this background, this thesis brings these concepts into conversation with one another to build an original analytical framework. This framework is used to investigate how HIV-related stigma is produced and experienced, and the implications stigma has for healthcare access. The research is placed in the disruptive context of a disaster, where power, identity, and space may shape stigma over a shortened period of time. Data were collected over six months in 2018 in Lilongwe city, Malawi. A mixed-methods approach (semi-structured interviews and questionnaires) was applied across two urban settlements - Kawale and Mtandire - that had recently been affected by rapid-onset floods. 114 semi-structured interviews were completed with a diverse range of participants, including people living with HIV, key populations, HIV-negative people, representatives of social institutions, healthcare workers, and community leaders. The original framework for stigma enables this thesis to unearth new insights into how stigma is produced, expressed, and experienced. The research makes several key contributions. First, it presents a novel analytical framework, which can be applied to other stigmatised attributes and contexts in future research. Second, this research reveals how HIV-related stigma is socially produced within social institutions to enforce compliance with public health guidance. Third, the findings confirm that, once produced, stigma narratives are not universally experienced in the same way. How stigma is expressed and experienced is influenced by the multiple layers of a person’s identity and how their identity interacts with the space in which they are located. Fourth, this research discovers how rapid changes to physical and social spaces, in disaster contexts, exacerbate stigma and hinder people’s healthcare access. This emphasises how stigma-based HIV prevention campaigns are largely counterproductive to public health goals. Fifth, this research challenges representations of stigmatised people as passive victims. The findings reveal how people have agency to strategically avoid and/or resist their stigmatisation. These strategies are shaped by social processes relating to power, identity, and space, and have important implications for healthcare access. Based on these findings, this thesis makes key recommendations for HIV and stigma reduction policies. In particular, people-centred and context-specific interventions are recommended to achieve progress towards global HIV targets.

Date of Award	31 Dec 2021
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Tony Redmond (Supervisor) & Gemma Sou (Supervisor)