Rural vs urban residence and experience of discrimination among people with severe mental illnesses in Ethiopia

Stigma has been branded “the most basic cultural and moral barrier” to ending the global burden of mental illness [1]. Discrimination is the behavioural consequence of stigma, in which people are treated unfairly due to their condition [2]. Perceived or experienced discrimination can negatively impact upon help-seeking, access to care, recovery, and overall well-being among those with mental illnesses [2]. This may be particularly important in resource-poor settings, where the percentage of people who do not receive necessary mental health care is usually greater than 75% [3]. Furthermore, as the world urbanizes, with low-income nations doing so at the fastest rate [4], there has been increasing interest in better understanding the implications of urban versus rural living on overall mental health and well-being [5].

Nevertheless, there have been very few studies of discrimination in low-resource settings [6, 7] in general, and in sub-Saharan Africa in particular [8, 9]. Existing studies have rarely compared rural and urban populations, despite evidence of high levels of health inequity by residence on the one hand [10] and the prevailing view that more traditional, rural communities may be more tolerant of people with mental health problems [11]. In population-based studies from Ethiopia, both urban [12] and rural [13, 14] residence have been linked with higher levels of stigma, but levels have not been compared in the same study. Rural residence was independently associated with internalised stigma in a study carried out in a tertiary referral centre in the capital city, but this may be explained by selection bias [14]. In this study, we aimed to evaluate the experience of discrimination among persons with severe mental illnesses (SMI) in Ethiopia. Given findings from the Ethiopia Butajira population-based cohort studies showing excess mortality and low remission among those with severe mental illnesses (SMI; psychotic disorders and bipolar disorder) from a predominantly rural setting [15], we hypothesized that, in the Ethiopian setting, rural residence would be associated with higher levels of experienced discrimination in people with SMI.

People with SMI residing in urban neighbourhoods reported experiencing 1.66 times the discrimination compared to those residing in rural neighbourhoods, after adjusting for potential confounders. This finding is in agreement with a study from a neighbouring district which found that perceived stigma was more common among urban family members of those with SMI [12]. Our results can be read in the context of the landmark international studies by the World Health Organization [11, 30], which found that people with schizophrenia in “developing” countries had more favourable prognoses than those in “developed” countries. It is often considered that this may be due to a greater tolerance towards mental illness in low-income countries [31]; however, our results suggest that levels of tolerance vary by living place within Ethiopia. Although people with SMI in the population-based Ethiopian Butajira cohort did not have superior outcomes compared to people with SMI living in high-income countries, there was no difference in outcomes by residence [15, 32]. This is somewhat unexpected, as most health states have a worse outcome in rural settings due to a constellation of factors related to poor access to health care, lower health (and mental health) literacy and poorer socio-economic status [10]. It is possible that the higher rates of discrimination observed among urban residents compared to rural residents offset the health benefits of urban living.

The difference between urban and rural levels of discrimination might be explained by the nation’s recent rapid growth and urbanization. Ethiopia has the fastest growing economy in sub-Saharan Africa and the proportion of the population living in urban areas is on track to triple from its 2012 levels by 2028 [33]. The World Bank reports that job creation, infrastructure, and housing have not been adequate in handling the influx of migrants, leading to greater inequality of income and quality of life [33]. Thus, it may be more difficult for people with mental illness to find meaningful work and integrate into the daily life of urban areas. This is particularly consequential as the decision to migrate is often based on a promise of economic opportunity, yet, facing higher levels of discrimination in their new residences may actually lead to reduced opportunities. It is sometimes assumed that individuals in rural communities have stronger social and familial support networks, and that this may protect against discrimination [31]. However, in our sample, the strongest social support was reported by urban residents. Further, our analysis controlled for social support, so the pattern of more urban discrimination persisted despite any social support reported by participants.

Over one-third of the participants reported no discrimination on any items. This conflicts with findings of consistently high levels of stigma in Ethiopia [12, 13, 34]. One potential reason for this finding is that respondents may not believe they are being treated unfairly and that their condition justifies differential treatment. High levels of “not applicable” responses in our data may be an indication of this. For instance, 19.7% of respondents answered “not applicable” to being discriminated against in “starting a family or having children”. While some of these responses may be due to having no interest in starting a family, being too old, or already having a family, it is also possible that they did not feel as though starting a family was an appropriate endeavour for them. This concept can be described as self-stigma, which occurs when stigmatizing attitudes are internalized by the recipient [35]. In a hospital-based study from Addis Ababa, Ethiopia’s capital, self-stigma among people with schizophrenia was ubiquitous, and significantly higher amongst rural residents [14]. However, this study had a primarily urban, wealthier, and better educated population, and may not be fully comparable to our study population. Self-stigma may have contributed to both the low levels of overall reported discrimination and differences between rural and urban residents, but more research is needed to better understand the relationship between self-stigma and reports of discrimination in this setting.

Strengths of the study include the community-based case ascertainment (which reduced the risk of selection bias that is present in facility-based studies), confirmatory diagnostic interviews performed by trained mental health specialists and clinical assessments of symptom severity. However, there were study limitations. There is evidence that the construct and manifestations of discrimination varies between countries [2], and the DISC-12 was not specifically developed for the Ethiopian setting [22]. Social desirability may have affected the willingness of participants to attribute their experiences to discrimination. Bias in the discrimination questions could partially explain the difference between urban and rural discrimination. Certain questions, especially those regarding job-related discrimination, may be less relevant to rural residents, where formal employment is less common. Discrimination in the neighbourhood and in relationships were more common among rural residents, which could be related to less anonymity in these settings. Another limitation of the study is that we did not record whether the person with SMI responded to the DISC-12 questions or whether the caregiver provided proxy responses. In a follow-up wave of data collection for the same sample, 29.4% of responses were from the caregiver alone. Applying this percentage to the baseline dataset (the focus of this paper), we found that there was no significant difference in total DISC-12 scores where the person with SMI responded compared to when the caregiver responses (z = 1.412; p = 0.158). Care is also needed when generalizing these results to other Ethiopian populations, as what is considered urban might differ between predominantly rural districts like Sodo, and the capital city of Addis Ababa, for example. Although contact coverage for PRIME’s district mental health care plan was high (81.7%), participants from rural areas were significantly less likely to attend the health centre than their urban counterparts and therefore less likely to be included in this sample [36]; however, non-attendees had lower mean disability scores indicating that they were less severely unwell and likely to be at lower rather than higher risk of discrimination. Lastly, the data are cross-sectional and therefore we cannot make any conclusions about the directionality of the relationship between living place and experienced discrimination.

There is some evidence that social contact and mass educational campaigns can reduce stigmatizing attitudes among the general public [2, 6]. It may be that better access to treatment can help reduce experienced discrimination among people with mental illnesses, though it is unclear to what extent this needs to be augmented with other interventions. In Kenya, a comparable low-treatment setting, the implementation of mhGAP-IG led to a significant decrease in discrimination experienced by mental health service users after six months [9]. Similarly in a trial of community-based care in India, a significant reduction in discrimination after 12 months of treatment was observed [37]. We can speculate that these results are due to effective treatments reducing disability and consequentially improving participants’ abilities to participate more fully in social life, but this is an area that should be explored further. In the PRIME study, where the district mental health care plan relies on existing cadres of staff and has no formal anti-stigma or anti-discrimination intervention, it will be possible to evaluate where a scalable, predominantly facility-based model of care can impact upon discrimination.

Among persons with SMI in Sodo district, urban residence was associated with greater experienced discrimination. Overall, the reported levels of experienced discrimination were low considering the consistently high levels of stigma reported in the current literature. There may be distinct aspects of urban living in low-income countries, such as inadequate infrastructure and job opportunities, that should be further investigated as potential risk factors for discrimination. Policymakers seeking to expand access to mental health care should be aware of these distinct experiences and consider how social exclusion can be overcome indifferent settings.