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. 2024 May 29;25(1):1560.
doi: 10.4102/sajhivmed.v25i1.1560. eCollection 2024.

Lived experience of people with cryptococcal meningitis: A qualitative study

Neo A Legare  1   2 , Vanessa C Quan  2 , Nelesh P Govender  3   4 , Jane W Muchiri  5
Affiliations

Lived experience of people with cryptococcal meningitis: A qualitative study

Neo A Legare et al. South Afr J HIV Med. .

Abstract

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.

Keywords: HIV-associated cryptococcal meningitis; Johannesburg; lived experiences; qualitative study; routine care.

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Conflict of interest statement

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

Figures

FIGURE 1
FIGURE 1
Summary of pathways taken by people seeking treatment after cryptococcal meningitis signs and symptoms.
See this image and copyright information in PMC

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