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Lived experience of people with cryptococcal meningitis: A qualitative study
Neo A Legare1,2, Vanessa C Quan2, Nelesh P Govender3,4
1School of Health Systems and Public Health, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa.
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.
Insights
People with HIV-associated cryptococcal meningitis (CM) experience reduced quality of life and income loss post-diagnosis. Barriers like poor healthcare access and knowledge gaps hinder effective CM management in South Africa.
Area of Science:
- Medical Mycology
- Infectious Diseases
- Public Health
Background:
- Cryptococcal meningitis (CM) remains a significant health burden for people living with HIV, even with access to antiretroviral therapy.
- Understanding the lived experiences of individuals diagnosed with HIV-associated CM is crucial for improving prevention and care strategies.
Purpose of the Study:
- To explore and describe the experiences of individuals diagnosed with HIV-associated cryptococcal meningitis within routine healthcare settings.
- Focus on understanding patient journeys from diagnosis through treatment in Johannesburg, South Africa.
Main Methods:
- Qualitative, exploratory, descriptive, and phenomenological study design.
- Semi-structured, individual in-depth interviews conducted with nine purposively sampled participants.
- Data analysis employed the Moustakas phenomenological approach.
Main Results:
- Five major themes emerged, detailing the diagnostic and post-diagnostic experiences of participants.
- Diagnosis of CM led to significant impacts, including reduced quality of life, fear of mortality, and financial loss.
- Health-seeking behaviors varied, including self-medication and use of traditional healers, with public facilities often a last resort; barriers included negative healthcare worker attitudes and poor CM knowledge.
Conclusions:
- Individuals with HIV-associated CM face substantial negative impacts on their lives and struggle with accessing timely, quality healthcare.
- Enhanced patient education on CM, particularly for those initiating or re-initiating antiretroviral therapy, is recommended as part of standard HIV counseling.
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