Experiences and service-uptake factors of receiving and providing care for meningitis and its sequelae: a qualitative systematic review

Background: Meningitis is a life-threatening condition with substantial morbidity and mortality, especially in low- and middle-income countries (LMICs). While quantitative research has enhanced the understanding of diagnostic and treatment efficacy, qualitative data regarding the lived experiences remain underexplored. This systematic review synthesises qualitative evidence on the experiences of patients, caregivers, and healthcare providers regarding meningitis diagnosis, treatment, and care, as well as the barriers and facilitators influencing service uptake and provision. The review aimed to inform the development of World Health Organization guidelines for improving meningitis care. Methods: This systematic review was registered in PROSPERO (CRD42024514413). A comprehensive search of EMBASE, MEDLINE, PsycINFO, and CINAHL was conducted on February 13–14, 2024. Studies were included if they explored patient, caregiver, or healthcare provider experiences with meningitis or sequelae diagnosis, treatment, or long-term management. Thematic synthesis was used for data analysis. Quality assessment of each included study was performed using the Critical Appraisal Skills Programme checklist. Confidence of evidence was assessed using the GRADE-CERQual approach. Results: Out of 4735 identified studies, 19 were included in the final synthesis; seven were conducted in LMICs and 12 in high-income countries (HICs). The synthesis identified four overarching analytical constructs: diagnostic uncertainty and disparities in initial help-seeking; systemic and operational constraints on acute care delivery; the relational and psychological burden of meningitis; and barriers to long-term equity and continuity of care. Key themes included diagnostic challenges, delays in care-seeking due to cultural and socioeconomic barriers, and miscommunication between patients and healthcare providers. Critical barriers to care included systemic healthcare limitations, financial constraints, and inadequate public awareness of meningitis symptoms. Limited data on facilitators of timely care uptake were found. Conclusions: This synthesis highlights substantial context-specific disparities in meningitis care. In LMICs, the primary points of failure relate to access and resources, with financial barriers, cultural reliance on traditional healing, and systemic operational limitations impeding timely diagnosis and treatment. In HICs, the challenges are rooted in clinical processes and support systems, particularly healthcare workers’ diagnostic uncertainty, failures in patient-provider communication, and the absence of psychological support. Addressing these barriers through culturally sensitive interventions, improved healthcare infrastructure, enhanced patient-provider communication, and public health education is essential.