Slipping through the cracks: a qualitative study to explore pathways of HIV care and treatment amongst hospitalised patients with advanced HIV in Kenya and the Democratic Republic of the Congo

Abstract

Advanced HIV causes substantial mortality in sub-Saharan Africa despite widespread antiretroviral therapy coverage. This paper explores pathways of care amongst hospitalised patients with advanced HIV in rural Kenya and urban Democratic Republic of the Congo, with a view to understanding their care-seeking trajectories and poor health outcomes. Thirty in-depth interviews were conducted with hospitalised patients with advanced HIV who had previously initiated first-line antiretroviral therapy, covering their experiences of living with HIV and careseeking. Interviews were audio-recorded, transcribed and translated before being coded inductively and analysed thematically. In both settings, participants' health journeys were defined by recurrent, severe symptoms and complex pathways of care before hospitalisation. Patients were often hospitalised after multiple failed attempts to obtain adequate care at health centres. Most participants managed their ill-health with limited support networks, lived in fragile economic situations and often experienced stress and other mental health concerns. Treatment-taking was sometimes undermined by strict messaging around adherence that was delivered in health facilities. These findings reveal a group of patients who had "slipped through the cracks" of health systems and social support structures, indicating both missed opportunities for timely management of advanced HIV and the need for interventions beyond hospital and clinical settings.

High Prevalence of NRTI and NNRTI Drug Resistance Among ART-Experienced, Hospitalized Inpatients

“…A qualitative study conducted simultaneously in both settings revealed that before hospitalization, many patients had attempted to seek care primary health facilities multiple times but remained unwell eventually self-presenting at hospital when their health deteriorated severely. 25 Similar failure characteristics were seen in a recent Malawian study where HIV-DR was linked to an increased risk of postdischarge mortality. 26 Up to then, no specific data on the prevalence of high VL and drug resistance were available in this subgroup of hospitalized ART-experienced patients.…”

“…A qualitative study conducted simultaneously in both settings revealed that before hospitalization, many patients had attempted to seek care at primary health facilities multiple times but remained unwell eventually self-presenting at hospital when their health deteriorated severely. 25…”

‘Not taking medications and taking medication, it was the same thing:’ Perspectives of antiretroviral therapy among people hospitalised with advanced HIV disease

“…Similar ndings were reported in a study conducted in the Democratic Republic of the Congo and Kenya which reported that pathways to hospitalization were marked by social and economic stresses. (31) Others have described the 'triaging of daily needs' and 'competing of survival priorities' as drivers of disengagement in care, together with reporting that PLHIV re-engage with care when their circumstances change. (32)(33)(34) A limitation of the Universal Test and Treat (UTT) strategy is that at the time of diagnosis the counselling focuses on treatment and not on supporting the person in coming to terms with their HIV diagnosis.…”