Experiences of HIV-Related Stigma and Mental Illness Among HIV-Associated Meningitis Patients in Rural Uganda

Inflammation in and around the brain in patients with meningitis can lead to confusion, cognitive dysfunction, and behavioral changes associated with mental health disorders. Stigma associated with HIV or mental illness can complicate meningitis, leading to misdiagnosis or delays in diagnosis and care. The frequency of misdiagnosis and/or co-occurrence of meningitis and mental illness among people living with HIV (PLWH) remains uncertain. We explored the experiences of meningitis patients and the barriers and facilitators to care related to HIV stigma and mental illness.

We conducted a convergent mixed-methods study to evaluate experiences of patients who were hospitalized with HIV-associated meningitis from February 2017 to May 2022 at Lira Regional Referral Hospital in Uganda. Experiences among patients who survived and family members of patients who died were explored. Surveys were conducted to obtain demographic information, investigate stigma, and assess symptoms of mental illness. Semi-structured interviews probed the overall experience of patients with HIV and meningitis regarding social support, mental health, and stigma.

Twenty-four patients with HIV-associated meningitis and 20 family members of deceased meningitis patients were enrolled. Family members reported that 80% of deceased patients experienced stigma, whereas 29.2% of surviving patients reported experiencing stigma. Combined responses from surviving patients and family members identified 31.8% of patients with mental illness symptoms described as overthinking, depression, and/or anxiety, while 60.8% experienced HIV-related stigma. Among participants who died, family members reported mental illness symptoms in 40%, compared to self-reports of 25% in survivors. Barriers to HIV care included (a) lack of HIV education, (b) mental illness symptoms, (c) lack of social support, and (d) stigma or shame. While common facilitators were (a) access to HIV clinics and ART medication, (b) having a life purpose, and (c) social support.

Stigma and symptoms of mental illness were common among patients with HIV and meningitis, which likely affected antiretroviral therapy (ART) adherence and HIV care. Recommendations include (1) adding mental health screening during hospital admission for all meningitis patients, especially among PLWH, for early evaluation and treatment and (2) increasing community awareness to dispel misconceptions and reduce HIV-related stigma.