Social Support and Managing Schizophrenia in Tanzania: Perspectives from Treatment-Engaged Individuals and Relative Caregivers

Background & Purpose: Tanzania is a lower-middle-income country where people living with schizophrenia (PLWS) must rely heavily on families for financial and social support. How PLWS and their families understand, think about, and implement social support can profoundly impact recovery pathways, particularly in lower-resource settings with limited access to comprehensive mental health services. This study examined how clinic treatment-engaged persons living with schizophrenia and caregivers of PLWS describe receiving and giving social support in Tanzania. The study aims were to 1) describe the types of social support experienced and provided to PLWS via the perspectives of the affected individuals themselves and from caregivers' perspectives; and 2) examine differences in the types and expectations of social support articulated by the treatment-engaged population versus by caregivers.

Methods: A total of 39 semi-structured interviews were conducted with PLWS (n=19) and caregivers (n=20) in Tanzania across two geographic regions. Recruitment occurred in the departments of psychiatry at Muhimbili National Hospital in Dar es Salaam and Mbeya Zonal Referral Hospital in Mbeya. When selecting the sample, the focus was on achieving representativeness across participant subgroups (e.g., sex, study site location, length of illness, type of caregiver relationship). PLWS were all attending outpatient services, largely medication management, and relative caregivers who were accompanying patients to services (which is typical for outpatient services in this setting) were recruited on their appointment days. Outpatients and caregivers were recruited separately and were not matched to maintain confidentiality. All participants were aged 18 years or older and all interviews were conducted in Swahili. Thematic analysis was the broad analytic framework for the qualitative analyses via an iterative process that included reading, coding, data display, and data reduction. Thematic content analyses were based on four pre-defined dimensions of social support (instrumental, emotional, informational, and appraisal). Analyses were team-based with co-leads from Tanzania and the U.S.

Results: Analyses revealed four themes: 1) financial and basic needs support from families is common and critical for daily living (instrumental support); 2) there were mixed experiences and perceptions regarding provision and receipt of love and acceptance, with PLWS desiring more encouragement and moral support from their families (emotional support); 3) caregivers try to provide knowledge, guidance, and reminders for illness management, but acknowledge their own gaps in understanding recovery promotion and effective caregiving (informational & appraisal supports), and 4) a cross-cutting issue was calls from both PLWS and caregivers for more social support from the wider community.

Conclusion & Implications: Individuals living with psychotic disorders and their families have a right to recovery-oriented mental health services tailored to their cultural context. Social support is a multi-dimensional construct recognized by PLWS and caregivers in Tanzania as critical for illness management yet gaps in some dimensions remain, often related to lack of knowledge of how to bolster social support. Given the heavy reliance on families for social support in low-resource contexts, clinic-based psychiatric services should intervene with tailored psychoeducation on various aspects of social support for PLWS and their families to improve quality of life and functioning.