Poverty and mental illness
Most participants identified poverty as a major risk factor for mental illness. Poverty was reported to be an important cause of distress that might result in significant mental health problems. According to participants, many poor and unemployed people, especially the uneducated, attempt to cope with their frustrations and social problems by resorting to alcohol and other illicit drugs, which make them more susceptible to mental health problems. This was affirmed by some participants' research experience:
"...What we found out in our baseline survey was that people feel they have become mentally ill because of poverty. They are poor, they are restless, always worried, they don't sleep, they do abc..." (SSI, mental health professional, NGO).
Some of the participants described the relationship as a vicious cycle, and maintained that while poverty is a contributory factor for mental illness, poverty can also be a result of mental illness. Service users noted that in addition to people with mental illness being unproductive during the time they are hospitalized or on treatment, carers also spend much time nursing the sick relatives. This subsequently lowers their productivity, resulting in significant economic decline. One user specifically described the recurrent nature of mental illness as characterized by high expenses and no productive work, often leading to financial loss:
"...when I relapse, I have to use all the money and go back to zero. So, I have to begin afresh whenever I recover" (SSI, mental health service user)
It was further reported that people with mental illness sometimes become destructive, leading to strained relationships with family members and neighbours, and a need to spend money on the resolution of disputes at local courts. This further encroaches on their meagre resources. A few participants however did not refute the relationship, but also believed that the wealthy are equally prone to mental health problems just as the poor. One mental health professional was quoted as saying:
"...When you have a population and you look at the mental state of the population according to the social class, the distributions are U...I mean when you plot, you get a normal distribution curve. Those who are the poorest have a higher rate of mental disorders, and those who are the richest also have a higher rate of mental disorders" (SSI, Mental Health professional and Researcher)
Mental health-related stigma and service delivery
Mental illness continues to be regarded as a unique illness that is highly stigmatized by both high and low income groups. The stigma attached to mental illness was found to be mostly associated with belief systems regarding the causes of mental illness. According to some respondents, members of the public often consider mentally ill people to be possessed by evil spirits or paying a price for their bad deeds. The entrenched nature of stigma against mental illness was reflected in the responses by some of the presumably well informed participants who used demeaning language while referring to the mental hospital and the patients. One participant said:
"...because when you visit Butabika [psychiatric hospital] during working hours, you will think Butabika is a place for normal people. It is cleaner than many secondary schools...and even many other hospitals. You can think the people there are normal" (SSI, Member of Parliament)
In terms of service delivery, the majority of the participants believed that stigma against mental illness played a major role in the inequitable allocation of resources. Many respondents stated that with the inadequate resources available, mental health was usually allocated a very small proportion of the health budget, disproportionate to the disease burden. This was attributed to the misperception and high levels of stigma attached to mental health. In some general health facilities, the managers reported finding a great deal of resistance from facility administrators who are non-health professionals when it comes to allocation of resources and medical supplies to mental health. Facility administrators tended to view the mentally ill patients as 'gone cases', onto whom resources should not be 'wasted' because they are not expected to recover and become productive again:
"...because whenever we are buying drugs, again they say but for who? You know so it becomes a bit of a problem... even now in the administration, apart from us who are medical, the other people who are non medical look at those people as mad... you know...they think it is wastage of money to buy them drugs. So it becomes a bit of big problem" (SSI, Hospital Medical Superintendent, urban district).
Users and mental health advocates noted that stigmatization can be more destructive and disabling than the illness itself, and is a major obstacle to help seeking.
"...So, the disability comes in here.... it is the social disability which disables people. It comes because of the stigma. They are highly stigmatized....once they are labeled and even...sorry to comment on psychiatrists but when you are in hospital for example, instead of calling you by name, they call you "case"; "this case here, case"...That is not a proper way. Why do you call me case? Am a being and I have a name. Am not a case and I have a right to be called my name. (SSI, Key informant mental health service consumer)
"...You find that stigma not only hinders seeking help, but it really tortures the patient a lot. It is actually more disabling than the illness itself (SSI, Staff, National Mental Health User Association)
Poverty as a source of stigma
In broad terms, most respondents interviewed affirmed a relationship between poverty and stigma among people with mental illness in Uganda. Poor people with mental illness are more prone to stigma and other unfavourable consequences of mental illness than their counterparts with higher socio-economic status. Participants argued that the mentally ill from a poor background are more ostracized and rejected than those from families of higher socio-economic status
"...Those ones with money are not affected. They can buy medicine, can rent, can do whatever they want. How will the mental illness affect them? They can get whatever they want. They are not stigmatized like us" (SSI, mental health service consumer 4)
The participants further argued that in most societies, the poor are usually marginalized, irrespective of their mental status. One participant in the rural district was quoted as saying:
"...what I know, if you are mentally ill, and you are from a good family, they can take care of you...maybe take you abroad or whatever...But if you are from a poor family, hah! You just wait until you die....(laughing)...maybe the vehicles knock you or what....but if you are from a good family, maybe they can take you to Butabika [psychiatric hospital] or where. Because even Butabika...somebody has to take you there. If you are rich, you get care, but if you are poor....hah!, you can't access any help... there it is really terrible. So you remain mad because of poverty" (SSI, Law and Justice Sector).
Thus, in the opinion of some stakeholders, material resources can offer protection against stigma.
Stigma, mental illness and the path to poverty
People with mental health problems who were interviewed confirmed that they were alienated by their family members and significant others due to their illness. They reported that after an episode of mental illness, relatives and significant others distance themselves and the consumers become socially excluded. Their social relationships thus tend to deteriorate very fast, leading to limited access to opportunities such as employment or other avenues of income generation. They further reported being excluded from a number of activities and being denied employment or other opportunities that could serve to enhance their economic well being:
"...of course nobody can employ you if they know that you have mental illness. But if you get someone who doesn't know that you are a person with mental illness, he may employ you, and you will do his work well. But the moment someone tips him off that you have mental illness, I tell you, you will not last there. He will look for any excuse and eventually fire you" (SSI, mental health service consumer 4).
Denying people with mental illness employment was reported to stifle the sufferers' chances of progressing financially and developing their careers. Some of the consumers admitted having lost jobs on being diagnosed with mental illness because of the associated stigma, leading to a dwindling socio-economic status. One user recounted:
"...now like in public service...they used to have a question "Have you ever suffered from mental illness?"....it would have been a good question if they are going to help you on the job so that they will not overburden you. But it was a bad question used negatively because they would never call you for interview however much capability you had. Once you declared that you have ever suffered from mental illness, automatically you would be disqualified (SSI, mental health service consumer 5).
According to some respondents people with mental illness are also less likely to send their children to school. Some participants cited earlier studies where this had been one of the major findings:
"...again in that same study, we found that in a household, if someone (maybe the head of the family) had mental distress, the children were less likely to go to school. So, that makes that...the link is associational. But also if the children are not going to school, obviously the human capital of those children is going to be much less than it is in a family where there is no mental disorder. Because it is usually through education that people can improve their socio-economic status" (SSI, Mental health professional, Academic and Researcher).
Similarly, according to the teachers who were interviewed, children with mental illness are less likely to attend and continue with school. If they are already in school at the time of onset of the mental illness, chances are high that they will be forced to drop out. This was attribute to two reasons. Firstly, such children often fall victims of stigma by schoolmates and teachers, prompting them to abandon school. Secondly, the parents might not only look at them as a disgrace but have very little hope in them and believe it is a waste of money to keep them in school. The resulting lack of education was believed to perpetuate trans-generational poverty.
The stigma manifested in the tendency to believe that mental illness is a permanent condition and those with the condition can never recover makes it hard for them to access financial services such as loans from micro-finance institutions. A number of participants noted that although it may not be a formally documented policy, micro-finance institutions do not extend loan services to people known to have a mental illness, thereby denying them opportunities to engage in income generating activities.
Poverty, stigma and service utilization
According to many respondents, poverty also dictates the extent of mental health service utilisation. Access to better mental health services was reported to be extremely hard for the poor, especially those in the remote areas. Furthermore, even where free services are available in public health facilities, transport costs remain a major obstacle, particularly for those living in remote rural areas. This prolongs the period for which the poor people will battle with their mental illnesses, worsening the effects and making it more likely that their condition will become chronic, thereby exposing them to more stigma.
Stigma was reported to affect disclosure of the illness, which results in delayed help-seeking. Some users reported being aware that many people are uncomfortable identifying with mentally ill people. They maintained that this often prompts them to deny suffering from mental illness, and to decline seeking help at mental health facilities.
Some general health workers reported that some people with mental illness and the carers do not only avoid seeking help at mental health facilities but also conceal information about the mental illness:
"...they prefer not to disclose or share details of their mental illness. As you take history, you may realize that it is mental illness. But when you ask, they deny. They deliberately decide to give confusing history of the problem" (SSI, PHC doctor, urban district).
It was also pointed out by some respondents that consumers from higher socio-economic groups tend to seek as much privacy as possible, and make use of private sector facilities, where fewer people will therefore get to know about their condition. They do not want to identify with public mental health facilities because of the attached stigma. By seeking help from private facilities however, costs of care are increased. This high expenditure, coupled with the recurrent nature of mental illness, was reported to have negative financial consequences.
Differing perspectives between stakeholders
It is important to note the varying perspectives that emerged between stakeholders regarding poverty, stigma and mental health. While some of the participants simply commented on stigma from the perspective of how they see people in the community treating those with mental illness, users were more likely to talk about stigma of mental illness given their unfortunate experiences of being victims of stigma. They commented on stigma in a rather disheartening manner, expressing views of stigma as a barrier to help seeking and service utilization. The policy makers on the other hand were more likely to suggest what could be appropriate strategies for averting stigma.
Participants from within the health sector mainly commented on stigma as a major hindrance to effective service delivery. Unlike other participants, they seemed to show more sympathy possibly due to a better appreciation of the experience of mental ill-health. On the other hand, some of the participants outside the health sector suggested strategies that would propagate stigma, as a means of ostensibly fighting stigma. This was a clear indication of low appreciation for mental health issues, which has been shown to be one of the challenges to mental health service delivery in low income countries. In one instance, a magistrate proposed keeping people with mental illness confined in institutions as one effective way of fighting stigma. The findings thus underscore the high investment and effort required to fight the deep rooted stigma reported by a range of stakeholders in Uganda.