Lived experience of people with cryptococcal meningitis: A qualitative study

• Published in: Southern African journal of HIV medicine Vol. 25; no. 1; p. 1560
• Main Authors: Legare, Neo A, Quan, Vanessa C, Govender, Nelesh P, Muchiri, Jane W
• Format: Journal Article
• Language: English
• Published: South Africa African Online Scientific Information Systems (Pty) Ltd t/a AOSIS 2024; AOSIS (Pty) Ltd; AOSIS; Southern African HIV Clinicians Society
• Subjects: Antiretroviral therapy; Antiviral agents; Beliefs, opinions and attitudes; Biology; Clinical trials; Consent; Coronaviruses; COVID-19; Cryptococcal meningitis; Diagnosis; Drug self-administration; Employees; Health aspects; Health care; Health Care Sciences & Services; Health Policy & Services; HIV; hiv-associated cryptococcal meningitis; Human immunodeficiency virus; Immunology; Interviews; johannesburg; Laboratories; lived experiences; Medical personnel; Meningitis; Mortality; Original Research; Patients; Public health; qualitative study; Quality of life; routine care; South Africa; lived experiences; qualitative study; HIV-associated cryptococcal meningitis; Johannesburg; routine care
• ISSN: 1608-9693; 2078-6751; 2078-6751
• DOI: 10.4102/sajhivmed.v25i1.1560

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.
To explore and describe the experiences of people diagnosed with HIV-associated CM in routine care. Two public healthcare facilities in Johannesburg, South Africa.
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.
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.
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.