“It took a piece of me”: initial responses to a positive HIV diagnosis by Caribbean people in the UK

Abstract

How do people respond to the news that they are HIV positive? To date, there have been few published qualitative studies of HIV diagnosis experiences, and none focusing on Caribbean people. Twenty-five HIV-positive Caribbean people in London, UK, related their diagnosis experience and its immediate aftermath in semi-structured interviews. Diagnosis with HIV caused profound shock and distress to participants, as they associated the disease with immediate death and stigmatisation. The respondents struggled with “biographical disruption”, the radical disjuncture between life before and after diagnosis, which led them into a state of liminality, as they found themselves “betwixt and between” established structural and social identities. Respondents were faced with multifaceted loss: of their known self, their present life, their envisioned future and the partner they had expected to play a role in each of these. A minority of accounts suggest that the way in which healthcare practitioners delivered the diagnosis intensified the participants' distress. This research suggests that healthcare practitioners should educate patients in specific aspects of HIV transmission and treatment, and engage closely with them in order to understand their needs and potential reactions to a positive diagnosis.

Keywords:

• HIV diagnosis
• liminality
• biographical disruption
• black
• Caribbean
• UK

Acknowledgements

The LIVITY Research Project was made possible through the funding of the Medical Research Council (MRC), UK. The staff at the nine clinics from which the LIVITY Research Project participants were recruited ensured the smooth conduct of the research. The most gratitude is reserved, however, for those patients who took the time to think and talk about difficult issues.

Notes

1. Notations after quotations list respondents' sex (M/F), country of diagnosis and time (in years, unless otherwise stated) since diagnosis.