A feminist, participatory and assets-based exploration of women's experiences of ageing with HIV in London 2017

Data collections consists of 14 transcripts of interviews with women over the age of 50 in London who are living with HIV (human immunodeficiency virus).
This research adopts a feminist and assets-based approach to explore the experiences of women ageing with HIV in London. Building on the foundation of a systematically approached review of the social science literature on ageing, women and HIV, it identifies key gaps in the evidence base and limitations in the epistemic conditions of its production. A comprehensive review of conceptual and theoretical literature on the concepts of participation and community follows, from which emerges a theoretical framework and research praxis that uses feminist and reflexive approaches to define a model of ‘research as advocacy’. This model seeks to use narrative and story-telling to both understand women’s experiences of ageing with HIV, and to expand the evidence base through original methodologies and approaches. Innovative methods used include participatory creative workshops (including a body mapping exercise), participatory literature review, life story interviews and a participatory analysis. These methods, supplemented also by a policy review and stakeholder interviews, generate new evidence on the experiences of women ageing with HIV in London. Three themes emerge from this research: persistence; participation and personal connections; and resilience. Living long-term with HIV for many women includes the experience of surviving a terminal diagnosis, which brings with it emotional and psychological challenges encapsulated in the concept of ‘survivor conflict’, developed and presented in this study. The experience of living with HIV enables participation in an HIV community and shapes relationships and belonging within wider communities and social networks. This thesis therefore offers both methodological exploration and innovation as well as findings on the health and social care needs and experiences of older women living with HIV.