Mental Health: Schizophrenia in Uganda

Schizophrenia is a mental health disorder in which the person affected has abnormal social behaviour and failure to understand what is real. Common symptoms are delusional belief, confused thinking, hearing voices, failure to engage in social situations and lack of motivation. People with schizophrenia typically have additional mental health problems such as anxiety disorder, major depressive disorders and substance use disorder. Symptoms typically come on gradually in young adulthood and last a long time. Wikipedia continues:

The causes of schizophrenia include environmental and genetic factors. Possible environmental factors include being raised in a city, cannabis use, certain infections, parental age, and poor nutrition during pregnancy. Genetic factors include a variety of common and rare genetic variants. Diagnosis is based on observed behavior and the person's reported experiences During diagnosis a person's culture must also be taken into account. As of 2013 there is no objective test. Schizophrenia does not imply a "split personality" or "multiple personality disorder"—a condition with which it has been confused with in public perception.

The 1975 survey Schizophrenia in the African countries makes the following observation about schizophrenia:

Schizophrenia in its classical form is quite rare in traditional African societies, and it appears with rapid social changes which organize societies with cultural models designed on occidental societies.

The report The Social Determinants of Schizophrenia: An African Journey in Social Epidemiology makes the following observation:

Rapid urbanization, industrialization, migration, conflict and ongoing poverty and deprivation characterize most of sub-Saharan Africa in recent decades; and it is likely that these potent risk factors for psychosis have contributed to shifts in the social epidemiology of psychosis and schizophrenia in that continent. 

This trend is reflected in the report Prevalence of delusional ideation in a district in southwestern Uganda which found that:

Higher rates of delusional ideation and higher levels of distress and preoccupation were strongly associated with urban residence.

It is interesting to conclude, the report continues, that urbanisation is significantly stressful across cultures, because these results mirror results of a study in the Netherlands.

A study Major mental disorders in Addis Ababa, Ethiopia. I. Schizophrenia, schizoaffective and cognitive disorders reports a lifetime prevalence of 0.9% for Schizophrenia and schizoaffective disorder. Applying 0.9% to the 2014 population of 34,900,000 in Uganda, there are an estimated 314,100 Ugandans with schizophrenia.

As I have shown throughout this blog, stigma and prejudice are associated with all forms of disability. Schizophrenia is no exception. This article, Stakeholder perceptions of mental health stigma and poverty in Uganda, discusses the burden of stigma for all people involved with schizophrenia. The article concludes:

According to a range of mental health stakeholders in Uganda, there is a strong interrelationship between poverty, stigma and mental illness. These findings re-affirm the need to recognize material resources as a central element in the fight against stigma of mental illness, and the importance of stigma reduction programmes in protecting the mentally ill from social isolation, particularly in conditions of poverty.

All mental health conditions besides affecting the diagnosed person have consequences for family and friends. This survey, Chronic Sorrow: Lived Experiences of Caregivers of Patients Diagnosed With Schizophrenia in Butabika Mental Hospital, Kampala, Uganda, sheds some light on the experiences of caregivers:

Our sample of 22 participants was small but representative of the feelings of caretakers for the severely mentally ill attending the national mental referral hospital. There were more females than males because the females, in this country, generally take up the role of care-giving/caretaking. It is the females who stay with the patients at home, take them to hospital and stay with them in the hospital while the men go looking for money which they provide to facilitate the care giving. This is not unusual in African communities with patrilineal kinship systems, Uganda inclusive.
Nine out of ten participants (90%) scored positive for chronic sorrow. This prevalence of chronic sorrow is similar to findings by other researchers among people experiencing different types of losses. For example among the studies that were carried out by Nursing Consortium for Research on Chronic Sorrow (NCRCS), out of 98 persons, 87 (88%) evidenced chronic sorrow (Burke, Eakes, & Hainsworth, 1999). Olwit and Jarlsberg (2014) had similar findings (88%) among the people with facial disfigurement in Uganda experienced chronic sorrow. The intense emotional experiences of chronic sorrow in this study are consistent with findings in the Western world; consisting of confusion, sadness, devastation, anger, fear and worry (Eakes, 1995). In another study, Eakes et al. (1998) found that the intensity of these feelings varied from person to person. This could be because of the mixture of the study sample, because grief-related feelings change with time, being more intense at the beginning when caretakers experience disbelief, shock, confusion and devastation but which later on abates with time. This, therefore points out the importance of health workers taking time to talk to the caregivers especially with newly diagnosed patients in hospital. This helps caretakers express their emotions/feelings and clear out any misperceptions as health-workers provide them with health education about mental illness and help them to develop positive coping strategies.

Florence Anene (left) counsels women suffering from mental illnesses

What is the experience of schizophrenia like for someone? This article, Detecting mental illness still a major hurdle in Uganda, talks about the experiences of of one woman:

In 2012, Florence Anene was just 20 years old when she got incarcerated at Bomah prison in Kitgum district after attempting to drown herself and her three children into River Ogili.
While in jail battling charges of attempted suicide, she experienced numerous epileptic attacks and psychotic incidents, which were not taken seriously.
But after six months in detention, prison authorities diagnosed Anene and found her to be suffering from severe schizophrenia; a mental illness with common symptoms like unclear perception, hallucinations, reduced social engagement and inactivity.
Thereafter, Anene was released and transferred to a World Vision mental health center in Kitgum for rehabilitation, with her three children staying at a local church for over a year.
It was discovered that Anene’s attempted suicide and murder of her children had been influenced by the loss of her husband four months before her arrest.
“After his [husband] death, I was depressed, with no job to manage the children and the needs at home,” she recalls.
Anene had met him in Mucwini sub-county during the Kony guerilla war in northern Uganda and hardly knew much about him.
“I didn’t know any of his relatives; my parents had died during the war. So, everything depended on him,” she says.
At the moment, Anene has made a full recovery and was reunited with her three children. She is now a volunteer with the Mental Health Gap Action program (mhGAP) project, a World Health Organization (WHO) initiative to scale up services for mental, neurological and substance-use disorders.
Anene specifically counsels and comforts women battling mental health illnesses. The five-year program, which is currently being piloted in the three districts of Kamuli, Jinja and Kitgum, is funded by World Vision and implemented by government.
Doctor Sheila Ndyanabangi, an official at the mental health care unit in the ministry of Health, says there are 170 mental disorder patients currently under medication, psychosocial support and reintegration in Kitgum district.
So, Anene’s touching story was just one of tales of overcoming adversity. Such initiatives where cause for celebrations as World Vision commemorated 30 years of service in Uganda; a journey that began after the 1981-1986 war that brought the current government to power.
It started with only volunteers but has now grown into a mature child-health-focused organization.

In summary schizophrenia is a mental health disorder that comes with the baggage of stigma and prejudice. It also has a profound impact on carers, often leading to depression and chronic sorrow. It is therefore important that carers be advised and offered coping strategies for their feelings about schizophrenia. Schizophrenia is a disease that affects the person diagnosed and their principle carer. As such schizophrenia carries a double burden.

For more information about schizophrenia contact the Uganda Schizophrenia Fellowship (USF) and see also World Fellowship for Schizophrenia and Allied Disorders.