Stakeholder perceptions of mental health stigma and poverty in Uganda

Stigmatization of individuals diagnosed as having serious mental illness has been observed across the world [1]. Stigma does not stop at the illness: it marks those who are ill and their families over generations, institutions that provide treatment, psychotropic drugs and mental health workers [2]. The family members who help care for people with mental illness report feeling stigmatized as a result of their association with the loved one having mental illness [3]. The presence of stigma starts a vicious cycle that leads to discrimination in all walks of life [1], decreasing self esteem and self confidence, and adversely affecting social engagement. The resultant reduction in self-esteem may increase disability by reducing access to social and financial resources [4].

While there is considerable descriptive evidence regarding the role of stigma in mental illness, there is also a large body of evidence from high, middle and low-income countries, demonstrating an association between poverty and mental illness [5, 6]. Poverty is not only a consequence of mental ill-health but also often precedes mental illnesses such as depression and anxiety; making it an important risk factor for mental illness and other negative outcomes [5–7].

For mental health consumers, poverty may mediate the impacts of mental illness [8] although more work is needed to understand this relationship [9]. The social relationships made difficult by reduced interpersonal functioning may be further strained by poverty. Lack of income has been said to negatively affect opportunities for social network development and social integration [10], and to work against the empowerment of mental health service consumers [11]. Poverty therefore has grave implications for people's health, education, social relations and social inclusion [12].

While mental illness affects individuals at all economic levels, many people with mental health problems end up in poverty due to the stigma attached to being labeled mentally ill. This stigma frequently makes it difficult for them to enter or re-enter the workforce [13]. If employed, individuals with mental illness may suffer disparaging remarks at work due to a lack of sympathy and understanding [14]. The physically demanding nature of unskilled labour (a hallmark of most African economies) also makes it difficult for disabled people to be involved in labour intensive activities. This situation is made worse by outright social exclusion of disabled people that constrains disabled people's participation in the job market [15]. The experiences of stigma catalyzed by poverty revolve around experiences of devaluation, exclusion, and disadvantage [16], which may be internalized in the forms of self-hatred, self-isolation, and shame [17].

Thus three powerful forces: material deprivation, the stigma of mental illness and the stigma of poverty interact in the lives of people living with mental illness in conditions of poverty. Although the relationship between poverty, stigma and mental illness has been documented in high income countries, little has been written on this relationship in low and middle income countries; and to our knowledge, this has not been researched in Uganda. This is an important issue given the levels of extreme poverty and social isolation endured by people with severe mental illness in low and middle-income countries. Within East Africa, Uganda has the highest level of income poverty, with an annual income per capita of $300 as compared to $350 and $580 for Tanzania and Kenya respectively [18]. Although there is little data on the prevalence of mental illness in Uganda, one third of the Ugandan population has been said to have some form of mental disorder [19]. The 2006 household survey by the Uganda Bureau of Statistics indicated that 4% of the households in Uganda had at least one member with a mental disability [20]. People with mental illness are not only among the poorest in society, but they remain poor for very long periods of time, and from generation to generation [15].

In this paper, we set out to explore the opinions of a range of mental health stakeholders in Uganda regarding the role of poverty and stigma in the experience of people living with mental illness. Specifically we set out to assess the way in which these stakeholders constructed notions of poverty, stigma, mental illness and their relationship in the Ugandan context. This paper forms part of a wider study that aims to explore the policy interventions required to address the vicious cycle of mental ill-health and poverty in Ghana, South Africa, Uganda and Zambia [21].

Semi-structured interviews (SSIs) and focus group discussions (FGDs) were conducted with a variety of mental health stakeholders in Uganda. Individual SSIs were used as they are an effective qualitative method for learning about the perspectives of individuals related to a particular topic [22]. These interviews also allowed for the detailed exploration of a particular individual's point of view. FGDs were conducted with some relatively homogenous groups of participants (such as nurses or teachers) in order to elicit participants' views; to document the discussion and interactions between these participants in relation to particular topics; and to capture a range of opinions within these groups, using the limited time and resources that were available.

Selection of the participants was done purposefully, based on a number of principles: participants represented a range of key mental health organizations in Uganda; they held specialized knowledge or had specific experience related to mental health policy, services and poverty; or they represented a variety of perspectives on mental health, poverty and stigma. In total, 62 semi-structured interviews and 6 focus group discussions (each consisting of 5–9 participants) were conducted over a 6-month period.

Of the 106 participants, 48 (45%) were female. The majority of the female participants were from the health and education sectors, specifically nurses and teachers respectively. These two were also the most represented sectors in the study. All the participants were adults aged 19 – 72 years of age; with the majority being in their thirties and forties. All 7 mental health service users were receiving services at the National Mental Hospital, and were mentally well at the time of the study. Four were males and three were females. Of the four males, one was a well known man in his early forties, who had just lost his political career after having suffered with a mental breakdown. Another one was a health worker, and one of the founder members of the national user support organization. Another one was a young man in his late twenties, and a University drop-out. The last one was an unemployed man who had battled with mental illness for nearly 20 years. Of the 3 female users, one was a prominent business person. The second one was a 19-year-old woman who had dropped out of high school due to her mental illness. The last one was a young woman in her mid twenties and a prominent member of a regional user support group, who had lost her job as secretary in some organization following a manic episode. Family members of mental health service users were not interviewed as a separate group of stakeholders. However, several of the other stakeholders interviewed were also family members of mental health service users and they brought this experience to their interviews.

With the exception of two interviews, the interviews and focus group discussions were conducted in English. The two users who could not speak English freely were interviewed in the local language, and the interviews were translated to English. Written informed consent was obtained from all the participants. Ethics approval was provided by the Ethics committee and the office of the Director General of Health Services in the Ministry of Health, Uganda. The interviews and focus group discussions were audio-recorded and transcribed verbatim. The transcriptions were then coded and entered into NVivo7 qualitative data analysis software.

Thematic analysis of the data was conducted using a framework analysis approach. This approach was explicitly developed in the context of applied research, and is gaining popularity in health policy and systems research [22]. By this approach, certain themes and sub-themes were collectively agreed upon by the investigators at all the research sites, based on the objectives of the study. A single framework for analysis was thus developed, and the transcriptions were coded on the basis of this pre-determined coding frame. Thereafter specific themes emerging from the interviews were added into the framework in the process of conducting the analysis, and transcripts were coded accordingly. All the four investigators at the Uganda site participated in the coding and analysis of the data. Coding was initially done on paper for the printed transcripts of the interviews. Two of the authors initially did the coding on paper, before data were entered and coded into Nvivo by a third author. The coded material was then checked by partners at Leeds University for consistency.

According to most stakeholders interviewed in this study, there is a strong relationship between poverty and mental illness; the two being mostly linked in a vicious cycle of exclusion, limited access to services, low productivity, asset depletion and diminished livelihood. This is in line with a number of earlier studies that describe the relationship between poverty and mental ill-health [5–7, 21, 23–25].

The findings further revealed that social stigma is a powerful mediating factor in the relationship between poverty and mental illness. Nearly all participants commented on stigmatization as a pervasive reality in the lives of mentally ill people. Although some did not comment about stigma in detail, it was clear that the most participants believed mental illness is the most stigmatized of all disabilities. It was also noted that users tend to have preconceived feelings of rejection even before they are subjected to stigmatizing tendencies. The stigma attached to mental illness in this study is consistent with that documented in numerous studies and reports world wide [1–3, 26, 27]. A local survey by Basic Needs, Uganda (2005) revealed that many families do not want to be identified with the mentally ill relatives and that when patient does not show improvement fast, he/she is abandoned. The belief that mental illness is incurable and mostly caused by bad spirits exacerbates and intensifies the stigma and exclusion.

According to the study findings, the social relationships of people with mental illness deteriorate very rapidly as family members and friends often dissociate themselves from the person with mental illness due to stigma, thus leading to a spiral of reduced social support and increased social isolation. In conditions of poverty, these social relationships are affected both through direct material constraints and the shame associated with poverty. Earlier studies have affirmed a correlation between social support and income in the general population [25]. Since mental illness impairs users' interpersonal functioning, cutting down the users' social networks [28], the link between social stigma and poverty becomes more obvious. This was clearly articulated by many of the stakeholders in this study, especially the users.

An important finding was that users and other participants reaffirmed denial of access to credit services for people with mental illness. This is in line with earlier findings by Ntale [15], that while there is no evidence of an official policy by financial institutions to exclude disabled people from accessing loans, most disabled people are denied credit facilities in nearly all financial institutions. These findings are in line with comments by Saraceno & Barbui [5], who argue that poverty acts through economic stressors such as unemployment and lack of affordable housing, preceding mental illnesses such as depression and anxiety, making poverty an important risk factor for mental illness as well as a consequence of mental illness.

The interviews generated two insights concerning the reasons for denying people with mental illness access to credit services. First, these people are believed to have impaired functioning and to be unable to meaningfully engage in productive work. They are thus believed not to be in a position to pay back loans. Secondly, individuals with mental illness would not be charged before the law in case they defaulted. Therefore financing institutions would prefer not to risk their money with people who could easily be acquitted for reasons of insanity, thereby causing financial losses. This practice has important implications for people with mental illness: access to micro-credit services is very necessary, especially for the rural poor who need the support as they attempt to escape poverty through income generating activities. Furthermore, decreased access to social and financial services has been found to increase the disability [4].

Despite the fact that mental health consumers are disproportionately impacted by poverty, income and material resources are often not given prominence in mental health policy [8, 29, 30]. There is currently no disability grant for people with mental disorders in Uganda, an issue which requires urgent attention in mental health policy. While the challenge of serious mental illness should not be downplayed, broader recognition of the role of material resources in consumers' lives is needed [11]. A failure to recognize poverty as a key mental health policy issue will continue to constrain efforts to facilitate consumer empowerment and social integration [29].

It was noted that poverty impacts on help seeking behaviors as patients may not be able to finance themselves to the health facilities especially if they are deep in the villages. This observation is in line with many other studies that have confirmed this link. Fauerstein [25] argued that the poor often live far from where care is offered and that the poorer the mentally disordered, the greater the burden. Some participants particularly from the rural district affirmed that people find it hard to spend their little money seeking medical services before the condition has worsened. In line with this, Fauerstein [25] argues that the poor are usually reluctant to seek medical help and value their physical health more than their mental health. The study findings thus seemed to suggest a vicious cycle of mental illness, stigma and poverty.

One major limitation of this study, is the fact that family members of people with mental illness were not interviewed as a separate group of stakeholders, although several of the stakeholders interviewed were also family members of service users. Family members should be included in future in such research, as a key stakeholder group.

Mental health stakeholders in Uganda report that a strong interrelationship exists between poverty and mental illness, with stigma playing a crucial mediating role. The users reported on poverty and stigma issues more than any other group of participants, as they have more direct and personal experience than most other stakeholders. Poverty, stigma and mental illness therefore seem to inter-relate in a vicious cycle, to the disadvantage of poor people with mental illness. These findings thus re-affirm the need to recognize material resources as a central element in the fight against stigma of mental illness, and the importance of education and stigma reduction programmes in protecting those with mental illness from social isolation, particularly in conditions of poverty.

JS is a Clinical Psychologist and is currently a Research Officer on the Mental Health and Poverty Project. He is also a part-time Assistant Lecturer in the Department of Mental Health and Community Psychology, Makerere University.

FK is a Senior Consultant Psychiatrist and Executive Director of Butabika National Referral Mental Hospital, Uganda. He is the Ugandan Principal Investigator on the Mental Health and Poverty Project. He is also the President Uganda Psychiatric Association, and formerly WPA zone 14 (East and Southern Africa) Representative.

CL is a Clinical Psychologist and Chief Research Officer in the Mental Health and Poverty Project, Department of Psychiatry and Mental Health, University of Cape Town, South Africa. He holds a PhD from the same University.

DK is a Senior Clinical Psychologist at Butabika National Referral Mental Hospital, Uganda. She is currently pursuing Doctoral studies at Norwegian University of Science and Technology.

EO is a Social Anthropologist and Senior Lecturer in the Department of Psychiatry, Makerere University Medical School, Uganda. She holds a PhD from Karolinska Institute, Sweden.