The mysteries and demands of HIV care: qualitative analyses of HIV specialists’ views on their expertise

Abstract

To deepen our understanding of the mysteries and demands associated with HIV care and to inform the debate about HIV specialization, we conducted in-depth interviews with a purposive sample of 20 identified HIV specialists in the San Francisco Bay Area. Participants were from several medical specialties and reported a median of 50% of their time spent in HIV patient care. Through constant comparison, a template of open codes was constructed to identify themes that emerged from the data. Data were analyzed according to the conventions of qualitative research and revealed six interrelated themes: (1) coping with uncertainty and rapid change: being ‘comfortable with mystery’; (2) the powerful role of experience; (3) the dual faces of knowledge: ‘knowing the patient’ and ‘knowing the facts’; (4) the dual faces of passion: challenge and calling; (5) stress and burnout; and (6) the relationship between academia and ‘the trenches’. The themes underscore the dual dimensions of HIV care: providers must interweave the ‘half-baked’ science about drug therapies, side effects and drug interactions with the psychosocial and lifestyle factors of the patient. They also provide insight into quantitative findings linking greater HIV experience with better patient outcomes and suggest that providers need skills associated with generalist and specialist training, a phenomenon that argues for a ‘special’ specialty for HIV care.

Acknowledgments

The authors thank Dale Danley, MPH, for his assistance with the literature review; Jennifer Fechner, BA, for administrative support; and Michael Allerton, MPH, and Paul Volberding, MD, for feedback on drafts of the manuscript. The authors also are grateful for the participation of the HIV specialists interviewed in the study—for their time, their good work and their passions.

This project has been supported by the NIH/NIAID/NIDR/NCI Grant #2 U01 AI034989 and by NIMH Grant #1 R01 MH51006.