Caregivers’ understanding of mental illness and their experience in caring for mentally ill individuals: A qualitative study among caregivers in Tanzania

Prevalence of mental illness is rising in low- and middle-income countries, including Tanzania, with implications at individual, societal, and systemic levels. Tanzania faces challenges such as limited mental health literacy and restricted access to healthcare. Family members often serve as primary caregivers, shouldering substantial community responsibility for supporting individuals with mental illness. Given that a significant portion of mental healthcare occurs in informal settings, the aim of this study was to determine caregivers understanding of mental illness and their experience in caring for mentally ill individuals. We used focused ethnography including observations and semi-structured interviews of 12 caregivers followed by content analysis. Participants included parents, siblings, and extended family members, each with varied perceptions of mental illness, commonly referred to as “kichaa” (insanity). Caregivers experienced violence, lack of understanding of the needs of the mentally ill, lack of support, and challenges in access to resources. Caregivers sought help from sources such as religious prayers, traditional healers, professional facilities, and biomedical medication. Caregivers’ experiences with mental illness in Tanzania are heavily influenced by cultural, societal, and religious traditions. This traditional perspective, coupled with lack of support, resources, and income, results in varied approaches to mental health treatment. Stigma surrounding mental illness is strong. Providing education about the nature of mental illness and professional treatment may help reshape societal perceptions and lighten the burden on caregivers. Given the strong cultural influence on healthcare decisions and treatment choices, any guidance should respect and incorporate family and community culture.