Perceptions about the cause of schizophrenia and the subsequent help seeking behavior in a Pakistani population – results of a cross-sectional survey

Schizophrenia is a severe mental illness characterized by fundamental disturbances in thoughts, emotions and perceptions. Even though not frequent it is amongst the most burdensome and costly diseases of the world[1]. WHO reports it as the 8th leading cause of DALYS (disability adjusted life years) in the age group of 15 to 44 years [1]. Schizophrenic patients place a significant burden on mental health delivery system through chronic disability, social dysfunction, frequent hospitalizations, substance abuse and overall poor compliance[2]. Furthermore the families and caregivers of schizophrenic patients also bear the weight of its negative social and financial influences. Schizophrenia imposes huge economic impact on individuals, families, and communities [3]. Hence it is a disease that affects not only the individual but bears an impact on the whole society.

Functional outcome in patients with schizophrenia is influenced by many factors including duration of illness, symptoms, sex, early detection and pre-morbid functioning [4]. Attitudes of family members towards schizophrenics is an independent predictor of social adjustment in these individuals [5]. Cultural features, socioeconomic level of the region and education level are also important among the factors influencing the incidence, course and duration of untreated psychosis of this disease. The duration of untreated psychosis or DUP has recently emerged as an important prognostic factor for first episode psychosis [6, 7].

Unfortunately, lay public across different cultures hold highly variable beliefs regarding the cause of schizophrenia. In developed countries social factors are considered to be the most important causative agents for schizophrenia [8]. In developing countries like India and Morocco a vast majority of people attributed the schizophrenic symptoms to supernatural phenomena, drug use, stressful life events, heredity or personality deficiencies [8, 9]. These beliefs about the causation of schizophrenia are the primary forces that lead the public towards variable treatment modalities and delays in professional medical treatment and hence alter the outcome of this illness [10].

Pakistan is a developing country where mental illnesses are widely perceived to have supernatural causes[11] and are stigmatized even by the educated masses [12].

Traditional healers along with psychiatric services are the main mental health service providers and the number of trained mental health professionals is small as compared to the population demands [11]. Thus, seeking the help of faith healers is often a first step in the management of schizophrenia. This leads to significant under detection and long delays in medical help for those in need. A recent study conducted in Pakistan showed that lack of awareness and false beliefs accounted for 61% of the cases of delayed consultation for first episode psychosis [13].

There is a serious dearth of data in this regard from Pakistan. Very few studies have been conducted to assess the beliefs of the general public regarding the cause of schizophrenia [13] and the help seeking behavior of these people towards a person displaying schizophrenic or psychotic behavior has never been explored. We therefore conducted a cross-sectional survey exploring the beliefs regarding cause of Schizophrenia and subsequent help seeking behavior in a Pakistani population.

It is well known that the general population of most developing countries attributes a wide range of non-biomedical beliefs to the cause of schizophrenia and other psychotic disorders [16, 17]. In fact people in developed countries have also displayed such beliefs [15, 18]. Therefore the wide variety and confused nature of beliefs found in our sample comes as no surprise. No substantial study has been conducted in Pakistan in this regard to compare the data of our study with. However, studies from India, Pakistan's neighboring country and similar in terms of cultural, social and traditional values and beliefs have shown that even urban and adequately educated families of India hold supernatural beliefs about the cause and management of schizophrenia [16] and majority of the psychiatric patients undergo traditional treatment [19].

The duration of untreated psychosis or DUP is the time from manifestation of the first psychotic symptom to initiation of adequate treatment. It has been shown to have a significant association with the outcome of the disease and is emerging as an important factor in the management of schizophrenic patients [6, 7]. Recent evidence also suggests a possibility of an association between DUP and homicide [20] making it an even more important variable to look at.

The different causes attributed to schizophrenia by our study sample are shown in table 2.

This is important, as it is this belief about the cause that drives the direction of treatment. If a person believes that the cause is a supernatural or religious one then one tends to seek faith healing as a remedy for the illness. And thus seeking such help then becomes the first step in the management of most mental disorders [21]. This causes substantial delays in seeking professional treatment, and subsequently leads to a poorer prognosis, higher burden on society and a higher cost of the disease. Our study has demonstrated that people who gave a biological cause for the disease were almost 13 times more likely to seek professional medical help for a relative with schizophrenia than those who gave other reasons for the disease. This highlights how the belief about the cause of schizophrenia can drive the help seeking behavior and thus decrease the duration of untreated psychosis. However, the tables show that people generally have multiple explanatory models to the cause and management of schizophrenia. Previous studies have also demonstrated that relatives of schizophrenic patients often hold multiple, diverse and sometimes contradictory explanatory models of illness [22]. This elicits the complexity of the issue and highlights the need for further local research in this area.

Another problem of holding non-biomedical beliefs is that they also lead to the stigmatization of schizophrenic patients. Schizophrenia is considered to be most stigmatizing of all psychiatric illnesses[23] and these non-biomedical beliefs could be one of the main reasons. This stigmatization adversely affects the self esteem of schizophrenics [24] and acts as a major barrier to recovery[25]. Awareness and Education can reverse this as countless studies have demonstrated the value of good family support in the recovery of schizophrenia[5] and both eastern and western data show how the beliefs of relatives of patients with schizophrenia are different from the general population and this is mainly attributed to their increased awareness about the disease [8, 26]. The relationship of non-medical beliefs with stigmatization was not amongst the objectives of this paper and therefore was not studied. However, this relationship is important to understand and should be an avenue for future research.

It is vitally important that these beliefs be changed. Previous studies have shown the importance of education and awareness in changing the beliefs of the general population to the cause of schizophrenia and thus their help seeking behavior[27]. Our study has also demonstrated that less educated people are more likely to have an incorrect perception about schizophrenia. A point to note here that education alone is not sufficient, awareness about the disease is more if not equally important in determining the causal beliefs among the population [28]. Living in a nuclear family system, being of female gender and having a higher age were also significantly associated with stating the correct cause. Most people of Pakistan live in a joint family system in which people tend to adhere to ancient and traditional concepts of diseases and false supernatural explanations are passed down from generation to generation. Awareness programs need to prioritize on the illiterate population, on young people, males and those living in joint family systems to be more effective.

However, the situation is more complex than this and simple awareness or educational interventions have shown to have limited success. A randomized control trial conducted in India showed that a structured educational intervention did significantly decrease the non-biomedical causal explanatory models but failed to decrease the treatment explanatory models [29]. While a review of literature demonstrated that enforcement of biogenetic causal theories amongst the public were linked to negative perceptions of dangerousness and unpredictability which led to fear and increased distancing [30]. Much research on the cultural perceptions of schizophrenia is needed and local data must be sought. The use of universal standardized interventions may not prove to be successful. Local beliefs need to be elicited, discussed and addressed in any intervention aimed at altering causal and treatment explanatory models.

The help seeking behavior of our population as demonstrated by this study is very distressing. Not many people said that they would seek professional medical help for a person displaying schizophrenic or psychotic behavior. This is indeed a grave problem as besides increasing the duration of untreated psychosis, it results in the underreporting of the disease. The correct prevalence of schizophrenia in Pakistan can not be known and thus the seriousness of the condition will always be masked. This prevents large scale and national level strategies from being devised to combat this burdensome and debilitating illness.

An important point to note here is that the sample in our study consists of a large proportion of educated people. This proportion is very different for Pakistan in general. More than 70% of the Pakistani population is illiterate and majority come from the low socioeconomic class. Thus the 40% professional help seeking behavior in our study is a large overstatement. It is unfortunate to note that if amongst a sample of educated people only 30% gave a medical cause and only 40% gave the medical treatment option then the proportions amongst the enormous illiterate population of 120 million maybe extremely unfavorable. Furthermore this study was conducted in a hospital setting and due to social desirability biases, people were generally expected to give a 'seeking medical help' answer. The study population is not representative of the population of Pakistan.

There is a need for further research in this topic and similar studies need to be conducted on more representative samples in order to estimate the true burden of the problem. This is the most important limitation of our study, that it can not be generalized to the whole population. The sample has been taken from a convenient site and thus lacks representativeness. However, the sample serves the purpose of this study which was to give an adequate idea of the beliefs and perceptions of the general population regarding the cause and management of schizophrenia. The purpose of this study was not to estimate exactly how many or what proportion of people have non-biomedical beliefs but to merely demonstrate that a majority of people have incorrect perceptions about schizophrenia and what these perceptions and beliefs are. It was essential to report these finding in order for this issue to be taken seriously and to open doors for future research and intervention

Other limitations of this study include the central tendency bias that exists with all likert scaled questions. No multivariate analyses were performed and thus potential confounding factors were not eliminated. However, this would have been out of the scope of this paper but should be used in future studies in which the objective would be to accurately identify those people with these non-biomedical beliefs and perceptions.

A vast majority of Pakistanis have many non-biomedical beliefs to the cause of schizophrenia. Their help seeking behavior in this regard is inappropriate and actually detrimental to the health of schizophrenic patients and thus has harmful effects on the society. To decrease the duration of untreated psychosis and limit the burden that schizophrenia has on society, further research is warranted. Effective interventions that that address the non-biomedical causal and treatment explanatory models need to be developed and tested.