Women living with HIV/AIDS and the bodily transformation process known as the lipodystrophy syndrome: a grounded theory study

Over the past decade, the lipodystrophy syndrome has become one of the biggest challenges in the field of HIV/AIDS. Yet, few qualitative studies have examined how lipodystrophy affects the lives of people living with HIV/AIDS by reconfiguring their bodies in unexpected ways. The main objective of this qualitative study was to explore and describe the transformation process that women experience following the onset of lipodystrophy. The data were collected using semi-structured interviews and were then analysed following the principles of grounded theory. Overall, the research participants explained how lipodystrophy had transformed their bodies, disrupted their identities and confined them to a fragile social trajectory. In this sense, the experience of lipodystrophy was described as a profoundly disruptive transformation that includes three distinct stages: normalisation, problematisation and pathologisation. This process was characterised by the progression of lipodystrophy, as well as an intensification of the efforts to regain control over the body. At last, this study provides health care providers with a better understanding of the psychosocial impact of lipodystrophy and the needs of women who suffer from this condition.