Legare, Neo A.Quan, Vanessa C.Govender, NeleshMuchiri, Jane W.2024-11-212024-11-212024-05-29Legare, N.A., Quan, V.C., Govender, N.P. & Muchiri, J.W. Lived experience of people with cryptococcal meningitis: A qualitative study. Southern African Journal of HIV Medicine 2024;25(1), a1560. https://DOI.org/10.4102/sajhivmed.v25i1.1560.1608-9693 (print)2078-6751 (online)10.4102/sajhivmed.v25i1.1560http://hdl.handle.net/2263/99224DATA AVAILABILITY : The data supporting the results are available from the corresponding author, N.A.L., upon reasonable request.This article is partially based on the author’s thesis entitled ‘Perceptions and experience of HIV-associated cryptococcal meningitis: A qualitative study of patients attending two public health facilities in Johannesburg’ towards the degree of Masters of Public Health in the Faculty of Health Science, School of Health Systems and Public Health, University of Pretoria, South Africa on 30 April 2022, with supervisors Dr V.C. Quan and J.W. Muchiri.BACKGROUND : The high burden of cryptococcal meningitis (CM) among people living with HIV persists despite widespread access to antiretroviral therapy. Efforts to prevent CM among people living with HIV could be hindered by a limited understanding of their lived experiences of CM and its diagnosis. OBJECTIVES : To explore and describe the experiences of people diagnosed with HIV-associated CM in routine care. Two public healthcare facilities in Johannesburg, South Africa. METHOD : This was a qualitative-methods exploratory, descriptive, phenomenological study. We conducted semi-structured, individual in-depth interviews with nine purposively sampled participants (comprising 5 men and 4 women). Data were analysed using the Moustakas phenomenological approach. RESULTS : Five themes and several sub-themes emerged from the data. Participants described their experiences of being diagnosed, which were marked by intense headaches. Diagnosis of CM led to reduced quality of life, fear of death, and loss of income. Participants described their CM treatment experience and health-seeking behaviour including self-medication, seeking help from traditional healers and general practitioners and utilising public health facilities as a last resort. Barriers to care included negative healthcare workers’ attitudes, unhealthy lifestyles, and poor knowledge of CM. CONCLUSION : People with HIV-associated CM face negative impacts prior to and after diagnosis. These patients struggled to access timely quality healthcare. Patients starting or restarting antiretroviral therapy, and thus at risk for CM, should receive CM education as part of HIV counselling.en© 2024. The Authors. Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.HIV-associated cryptococcal meningitisLived experiencesQualitative studyJohannesburgRoutine careHuman immunodeficiency virus (HIV)Cryptococcal meningitisPeople living with HIV (PLHIV)SDG-03: Good health and well-beingArticle