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 pretreatment 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 (preantiretroviral 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.
- qualitative research
- patient experience
- hiv care continuum
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Contributors All four authors were involved in the design of the study. JB and TR completed the initial analysis and interpretation of the data and subsequent discussion, and analysis was undertaken by all authors through team discussion. JB completed the first draft of the manuscript. All authors participated in critiquing and revising the draft manuscript and all approved the final draft. All authors accept accountability for the submitted paper.
Funding Funded by grants from Imperial NIHR Biomedical Research Centre, P35771, the Imperial College Healthcare Charity, P44223, and supported by the St Stephens AIDS Trust. No pharmaceutical grants were received in the development of this study.
Competing interests None declared.
Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.
Ethics approval Ethical approval was obtained from the National Research Ethics Service (NRES) (reference number 14/WM/0147) in May 2014, and research governance approval was obtained from the local sites.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The interview transcripts are anonymised and stored securely at Imperial College London on a password-protected database on a password-protected computer. The participants were assured of the security of their data, and they would remain confidential.
Collaborators Jane Rowlands, Christopher Higgs undertook some of the interviews at one of the two study sites.