Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014

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Bruton, Jane. 2018. Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014. BMJ Open, 8(3), ISSN 2044-6055 [Article]

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Official URL: https://bmjopen.bmj.com/content/8/3/e020208

Abstract or Description

Objectives To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example, whether they had experienced HIV care in the pre treatment era.
Design Qualitative interview study with framework analysis.
Setting Two large HIV adult outpatient clinics in central London.
Participants 52 HIV-positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre antiretroviral therapy (ART)), 1997–2005 (complex ARTs), 2006–2012 (simpler ARTs) and 2013 onwards (recent diagnoses).
Results Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side effects from early ART. However, despite improvements in ART and life expectancy over the epidemic, we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone. Fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis. Engaging with care was facilitated by a flexible approach from services/clinicians. Initiating treatment was a major life decision.
Conclusion We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment, services should continue to recognise the needs of patients for whom the diagnosis and treatment remain significant challenges.

Item Type:

Article

Identification Number (DOI):

https://doi.org/10.1136/bmjopen-2017-020208

Additional Information:

open access

Keywords:

NARRATIVES, patient experience, qualitative research, HIV care continuum

Departments, Centres and Research Units:

Anthropology

Dates: