Title

“It was just the most horrible experience of my life” understanding social and care experiences during and after mpox illness: qualitative accounts of people diagnosed and close contacts in Australia

Presenter

Anthony K. J. Smith

Authors

A.KJ Smith^1,2, D. Storer³, K. Lancaster¹, V. Cornelisse^3,4, J. MacGibbon¹, B. Haire^2,3, C. Newman^1,2, V. Delpech⁴, S. Paparini⁵, J. Rule⁶, A. McNulty^7,8, A. Bourne^3,9, T. Broady¹, H. Paynter¹⁰, M. Holt¹

Institutions

¹Centre for Social Research in Health, University of New South Wales, Sydney, Australia, ²Australian Human Rights Institute, University of New South Wales, Sydney, Australia, ³Kirby Institute, University of New South Wales, Sydney, Australia, ⁴NSW Health, Sydney, Australia, ⁵SHARE Collaborative, Wolfson Institute of Population Health, Queen Mary University of London, London, United Kingdom, ⁶National Association of People Living with HIV Australia (NAPWHA), Sydney, Australia, ⁷Sydney Sexual Health Centre, Sydney, Australia, ⁸School of Population Health, University of New South Wales, Sydney, Australia, ⁹Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University, Melbourne, Australia, ¹⁰Australian Federation of AIDS Organisations (AFAO), Sydney, Australia

BACKGROUND: In May 2022, a global outbreak of mpox emerged, with a small number of mpox cases (n=144) identified in Australia. There is scarce qualitative research focused on understanding people’s experiences of mpox illness and their interactions with healthcare services. This study sought to document in-depth qualitative accounts of the social, care, and health experiences of people directly affected by mpox.
METHODS: Semi-structured interviews were conducted between October-December 2022 with 13 people diagnosed with mpox living in Australia, as well as 3 close contacts (household or sexual partners). 6-month follow-up interviews were conducted in April-May 2023 with 7 participants, providing 23 interviews. Interviews were deidentified and thematically analysed.
RESULTS: All participants were gay or bisexual cisgender men. Most reported acquiring mpox overseas on holiday (n=11) in July or August 2022, and isolated or received care in Australia (n=8). Participants’ experiences of mpox illness, diagnosis, care and recovery were highly distressing amidst the uncertainty of the outbreak, and severe symptoms and long isolation periods were difficult to manage. Physical symptoms were primarily confined to the acute illness period, including lesions, fever, and pain, but half of participants (n=7) reported longer-term social and physical sequelae from mpox, including continuing changes to sexual practices (avoiding sex), ongoing fatigue, psychological distress related to pain or clinical care, major scarring, and the need for corrective rectal surgery. Most participants diagnosed with mpox (n=10) reported dissatisfaction with clinical care, including challenging communication with contact tracers, perceived judgement about sexual behaviour, inadequate pain management, or stigmatising care in hospital. Participants expressed a desire for greater empathy from clinicians and contact tracers and more proactive pain management.
CONCLUSIONS: Participants’ accounts portray negative healthcare experiences during an unfamiliar disease outbreak. This study highlights potential vulnerabilities in health system capacity to provide culturally-appropriate care when responding to a disease that is linked to sexual practices, anogenital symptoms, and requires pain management. The potentially enduring aftereffects of mpox, including physical symptoms and healthcare-related distress, suggest a need for attention to follow-up care.

Go to Session