Pathways to care with HIV-associated cryptococcal meningitis in Botswana and Uganda: Findings from a qualitative methods study

• Published in: SSM. Qualitative research in health 2023-12, Vol.4, p.100350-100350, Article 100350
• Main Authors: Lawrence, David S., Ssali, Agnes, Moshashane, Neo, Nabaggala, Georgina, Maphane, Lebogang, Harrison, Thomas S., Meya, David, Jarvis, Joseph N., Seeley, Janet
• Format: Article
• Language: English
• Subjects: Advanced HIV disease; Cryptococcal meningitis; Differentiated service delivery; HIV; Qualitative research
• ISSN: 2667-3215; 2667-3215
• DOI: 10.1016/j.ssmqr.2023.100350

HIV-associated cryptococcal meningitis remains a key driver of AIDS-related mortality. Mortality is twice as high in those who present later to care and with severe symptoms such as confusion. We embedded a qualitative methods study within a randomised controlled trial in Gaborone, Botswana and Kampala, Uganda with the aim of understanding pathways to care. We conducted in-depth interviews with trial participants and surrogate decision makers and analysed data thematically. Between January 2020 and June 2021 we interviewed 58 individuals. Pathways to care were prolonged because headaches were disregarded by participants and healthcare workers as a common occurrence with a broad differential diagnosis of predominantly benign aetiologies. There was also a lack of awareness of cryptococcal meningitis, and it was often after HIV was diagnosed or disclosed that the pathway accelerated, resulting in hospital admission. We outline key recommendations to reduce mortality and argue for the integration of social and behavioural interventions within differentiated service delivery models for advanced HIV disease. •HIV-associated cryptococcal meningitis causes 19% of all AIDS-related mortality.•Qualitative methods study exploring pathways to care in Botswana and Uganda.•Pathways to care were long and convoluted, resulting in worsening of the condition.•The primary symptom, headache, was attributed to common, benign aetiologies.•There was a lack of awareness of the condition among patients and providers.