Engaging and staying engaged: a phenomenological study of barriers to equitable access to mental healthcare for people with severe mental disorders in a rural African setting

Abstract Background In low-and middle-income countries, integration of mental health into primary care is recommended to reduce the treatment gap. In this study we explored barriers to initial and ongoing engagement of people with severe mental disorders (SMD) in rural Ethiopia after implementing integrated primary mental healthcare services. Methods A qualitative approach was employed. In-depth interviews were conducted with 50 key informants: service users/caregivers engaged with care (n = 17), non-engagers and their caregivers (n = 10), those who had initiated treatment but disengaged and their caregivers (n = 12) and primary healthcare professionals (n = 11). Two focus group discussions were conducted with community health workers (10 per group). Thematic analysis was used. Results Most respondents reported improved access to care, usually equated with medication, and were motivated to remain engaged due to experienced benefits of care. However, four main barriers to engagement emerged. (1) Poverty: resulting in inability to pay for medication and undermining vital social support affected engagement for all respondents. (2) Unreliable medication supplies and lack of second line options for inadequate response or intolerable side-effects. (3) The long-term nature of the illness: expectations of cure, stigma of chronic illness, low awareness about the illness and treatment and declining social support over time. (4) The nature of SMD: difficulty conveying the person when acutely disturbed and no flexibility for proactive outreach or legal frameworks to provide care when patients lacked capacity. In those who never engaged, geographical inaccessibility was an important barrier. Alternative cultural explanations for illness were only mentioned as a barrier only by two of the respondents. Conclusion Economic interventions may be needed to support ongoing engagement in care for people with SMD. Systems of care for chronic illness need to be strengthened in combination with legal frameworks. Expanded options for affordable and effective medication and psychosocial interventions are required for person-centred care