A focused ethnography exploring the experiences and quality of life of people living with schizophrenia in Harare, Zimbabwe

Background: Zimbabwe, a sub-Saharan African country with complex health problems, has limited mental health services, workforce, and research activity. At the time of this study, schizophrenia was estimated to account for five percent of the mental health burden, yet there were no studies about how people with this condition experienced life. This study reports the experiences and quality of life of 18 Shona people living with schizophrenia in Zimbabwe. The Shona language has no word or phrase for schizophrenia; it is understood as kupenga (mad), or kurwara nepfungwa (illness of the mind). Methods: A focused ethnography comprising six weeks of fieldwork was conducted in Harare, Zimbabwe, by a bilingual insider‚Äö-outsider researcher. Data from 12 men and 6 women were collected using semi-structured interviews, fieldwork, and the short form of the World Health Organization Quality of Life questionnaire, the WHOQOL-BREF. Interviews were digitally recorded in either Shona or English, as participants preferred, and if in Shona, transcribed and translated into English. Detailed field notes were recorded describing the setting and participants' behaviours and interactions. WHOQOL-BREF data were analysed using descriptive statistics and non-parametric tests. Qualitative data were analysed thematically using the Braun and Clark framework. Results: Field observations revealed that participants seemed like anyone else in Harare, though most were unemployed and walked or used public transport rather than driving their own vehicle. Typically, they lived in high-density suburbs, in crowded, multiple-occupancy households. The WHOQOL-BREF revealed that the participants were generally satisfied with their physical health, quality of life and access to health services. The strongest results were for the physical and psychological health domains, and the weakest for the social relationships domain, though the latter should be treated with caution as that domain is limited to three items. Those younger than 40 experienced statistically significant poorer quality of life than older people, and those with less education higher quality of life than those with more. Interviews produced nuanced insights, drew attention to the variable quality of life some experienced, and highlighted benefits of triangulating these factors with the WHOQOL-BREF. Six key themes emerged: beliefs and cultural understanding of schizophrenia; manifestations and explanations of symptoms; the place of spirituality, religion and faith as a source of hope and support; family upheaval and dislocation; living with stigma and discrimination; and limited and variable access to treatment and support. Initially, most people turned to apostolic faith (maporofita) or traditional n'angas healers for help, and found they provided physical and emotional support. Obtaining and paying for antipsychotic medications were challenging, and female participants recounted experiencing gender-based stigma. Discussion: Collectively, these results reinforce the complex interplay between culture, physical and psychological health, social relations, the environment, and demographic factors such as age, gender, education, marital status, employment, spirituality, and quality of life. This extended to generation, family and work relations, stigma, and identity, sense of belonging and self-worth, and challenges for people with schizophrenia living with a partner. Findings suggest that patriarchal gender traditions, family dislocation, and variable access to affordable medications and support, compounded the challenges participants faced, which undermined their quality of life and ability to function in socially acceptable ways. Insights about the importance of cultural beliefs, spirituality, faith and religion represent a largely untapped resource that could be used to promote social inclusion and mitigate stigma and discrimination. Improving access to mental health services and affordable medications, and initiatives to alleviate stigma, especially for younger adults and women, should be a priority for government and health service providers. Conclusions: This focused ethnography set in Zimbabwe found that participants living with schizophrenia often experienced stigma, lacked access to affordable medications, and other factors such as patriarchal gender traditions that undermined their ability to function, and their sense of belonging, identity and sense of self-worth. Spirituality was an important factor that contributed to quality of life and access to resources. The variation between the WHOQOL-BREF and interview data highlight the value of triangulating data to elicit nuanced understanding. Further research should focus on access to affordable medications, initiatives to strengthen quality of life, and provision of rural mental health services, nursing and other support services.