Ecologies of Care for Serious Mental Illness in Uganda: a Scoping Review

Introduction: Mental and substance use disorders are leading causes of disability worldwide. Yet only 10% of individuals globally receive treatment for such disorders, with an even higher treatment gap in low- and middle-income countries (LMIC). Serious mental illnesses (SMI), defined as a mental, behavioral, or emotional disorders resulting in serious functional impairment, primarily including bipolar disorder and schizophrenia spectrum disorder, remain misunderstood in countries with limited infrastructure (financial and human capital). This study explores the lived experiences, social ecologies, and political framework for the treatment of individuals living with serious mental illness in Uganda. Methods: This scoping review identified relevant publications using (1) a Boolean search, (2) manual screening of eligible publications, (3) identification of additional peer-reviewed articles and grey literature by hand searching the final list of included records, (4) thematic analysis and grounded theory to categorize studies into representative aspects of compiled literature, based on emerging themes of people with serious mental illnesses (PWSMI) ecologies, and (5) rigorous data extraction and analysis, guided by a comprehensive exclusion strategy for eligibility. Results: The 41 eligible articles included aspects of prevalence, comorbidities, caregiver involvement, and treatment pathways (traditional healers, community healthcare workers, primary care clinics, and national referral hospitals) for PWSMI in Uganda. Due to a lack of community mental health literacy, there are barriers to accessing high-quality, holistic mental healthcare for afflicted individuals. Discussion: People seek care wherever they can find it, and if they believe their symptoms align with the treatment modalities. For example, beliefs in spirit possession may lead a PWSMI to visit the neighborhood traditional healer before the more distant national referral hospital. Research further illustrated a direct link between the aforementioned ecologies and a decreased quality of life in caregivers due to the economic loss, erratic behaviors of the afflicted, and the strain of caring for PWSMI when interfacing with allopathic medicine. Stock-outs in health facilities and limited human resources cause overburdened health systems and the utilization of less efficacious psychotropic medications inconsistently. Additionally, misdiagnoses are common due to the lack of service oversight, and PWSMI often endure severe untreated side-effects from both traditional and allopathic medicine providers. Implications for Policy and Practice: While this study outlines the current pathways to care, there is room for improvement, including lessons for improving mental health policy and the implementation of appropriate community-based mental health practices. Conclusion: PWSMI are often left with low-quality choices to access care. This study suggests that, by critically analyzing community needs and complimentary programs, the livelihoods of people with serious mental illness and their caregivers can be vastly improved. Although PWSMI struggle with mental, physical, and social concerns, they are largely undervalued in the Ugandan context and isolated from society. Their pathways to recovery are wrought with frustrating encounters with peers and painful side-effects of treatment.