Schizophrenics’ children inherit a painful legacy; the burden of doubt and the pain of being stigmatized. These children grow up never knowing whether they will inherit this serious mental disturbance that causes broken thoughts, hallucinations, delusions of persecution and, in extreme cases, total alienation. Schizophrenia usually manifests itself in only 13% of the children of schizophrenic parents, in contrast with the 1% risk for the population at large. The disease’s symptoms appear later, usually between the ages of 20 and 29. Once they are past this age bracket, these children can relax, though in rare cases the symptoms appear later on. However, recent research shows that the effects of the stigma, which result from social prejudice and isolation, are persistent and affect everybody, including the offspring who show no signs of the illness. These children are usually raised in the midst of a dysfunctional family environment, in which the maternal or paternal reference is absent or openly disturbed. As a result, they often take on the responsibility of taking care of their sick mother or father, which impairs their development.
Medicine has established parameters for the monitoring of schizophrenics’ children, in an attempt to identify the symptoms early on and to establish treatment, so as to minimize the effects. The children who do not develop the illness are totally ignored by public health policies. “Their lives are dysfunctional in a number of ways, but this aspect is entirely disregarded,” states psychiatrist Angela Cristina César Terzian, a professor at the Federal University of Mato Grosso (UFMT). “The interaction between mentally ill parents and their families is very complex, but this is not taken into account by the training programs that mental health professionals attend nor by public health authorities, nor in discussions on the planning of new health care policies in our country.”
Angela coordinated a pioneering research project in Brazil centered on families of schizophrenics. This study, which was included in her doctoral thesis in 2006, revealed the impact of the disease on the lives of mental patients’ children and how the disease is translated into disturbances, even when these children do not inherit it. This study is part of the project “Maternity and paternity in schizophrenia: the impact of the illness on the lives of patients and their children”, coordinated by professor Jair de Jesus Mari, from the Federal University of São Paulo (Unifesp). The project is funded by the National Council for Scientific and Technological Development (CNPq) and the Coordination for the Training of University-level People (CAPES).
In two scientific articles, Angela presented some worrying data. In one of the studies, published last year in Revista Brasileira de Psiquiatria (the Brazilian Journal of Psychiatry), she analyzed the fertility and fecundity rates in a sample of schizophrenic patients treated at the Unifesp outpatient clinic in the capital city of São Paulo. In the second study, published in April 2007 in the European Archives of Psychiatry and Clinical Neuroscience, she described a survey with 489 patients treated at mental health care clinics in the Metropolitan Region of the city of Cuiabá, State of Mato Grosso. A comparison between these two worlds allowed her to attest that the low reproduction pattern of schizophrenic patients registered in developed countries is being repeated in urban regions of Brazil (São Paulo), but is probably not applicable to the hinterlands, as she observed in the example of Cuiabá. Of the sample 167 patients from the city of São Paulo, only 32 had had offspring. Of the 489 patients evaluated in the capital city of the state of Mato Grosso, 294 had had offspring, i.e., 60% of the sample. The rates in developed countries are significantly lower, at some 30%. All in all, the Cuiabá patients had had 828 children, an average of 3.3 children per schizophrenic patient.
The Cuiabá survey showed the burden that this generation of schizophrenics’ offspring will carry for the rest of their lives. The researcher selected 431 of these children, ranging in age from 18 to 55, to answer the questionnaire. Angela detected two problems. One was the professional situation of these children, which was abnormally precarious. Only 50.8% of the women had a job, vs. an average of 62.4% of the female population in Brazil. The problem was not as serious among the male population, but was still evident. Approximately 79.7% had a job, vs. an average of 89.7% of the male population in Brazil. Another negative aspect concerns marital state, which affects men to a greater extent. Only 54.7% of the men have been married at any time in their lives, vs. a national average of 66%. The difference in the female population is statistically insignificant. The study also surveyed problems related to education, but no significant differences were found in this respect among children of schizophrenics vs. the population in general. “It just so happens that this is a poor parameter for all of Brazil’s population,” says Angela Terzian. Nonetheless, there are indirect signs that point to impairment in this respect as well. None of the children of the respondent patients in Cuiabá had a university degree, vs. 8% of the Brazilian population in general.
There is no consensus as to the causes of schizophrenia. The most likely explanation is that the disease is a combination of associated illnesses caused by multiple factors. The best known ones are genetic predisposition and biochemical and structural alterations of the brain. Recent studies have shown that infections and even the stress caused by urban life and migration may help unleash the disease (see Pesquisa FAPESP no. 95). It has already been proved that the descendants of schizophrenics are more prone to developing the disease, but the hereditary factor, in itself, does not explain all the symptoms of the illness. This patchwork of possibilities makes it difficult to pin down the causes of the impairment of the neuro, psycho and motor development of the children who do not have symptoms of this mental disturbance. However, some kind of genetic component cannot be discounted, nor can the fact that this impairment might be the result of an incomplete manifestation of the disturbance. “It can be genetic, but it can also involve environmental factors or can be caused by the lack of stimuli in the child’s development because of the mother or father’s mental state,” says Angela Terzian.
Certain types of impairment clearly stem from cultural issues. It is likely that daughters of schizophrenics are not employed in the formal job market because they are the ones who look after their sick mothers or fathers. The marital situation is explained by prejudice and isolation. “The stigma attached to the child of a mentally ill patient is a very persistent one and it hampers social relationships,” states the researcher.
Reports about the children of patients, collected by the researcher, clearly reveal the drama described in the statistics. These are cases such as the one exemplified by 36-year old Vinícius, who has always taken care of his mentally ill mother:
“I don’t remember my mother ever showing any signs of tenderness towards me. When I was 11 years old, she was hospitalized and I didn’t see my mother for three years. I couldn’t go to school, I had to work, I didn’t have any friends. Today, I take care of her, she lives with me, my wife and my children. I have a profession, but I suffered alot. I live my life, trying to recover the life I lost way back then, by living now…”
38-year old Silvia, another respondent, recalled her dramatic childhood and adolescence, living with a schizophrenic father.
“When I was 6 years old, my father had a crisis. He didn’t work and stayed at home, taking care of me and my brother, who was 8 years old at the time. Then he had this crisis; he abandoned us and disappeared. It took us three days to find him. He was put in hospital and stayed there for 8 months. Whenever he was at home, we’d get upset, because we knew that he’d fight with us. He wasn’t the kind of dad who’d hit us lightly. He’d spank us very hard; anything that displeased him was a reason to hit us; he never talked to us… Now he’s being treated; he goes to the clinic, takes his medicine, goes to therapy, and has learned how to weave rugs. My brother and I, we took turns taking care of him, but today he helps me take care of my kids. I don’t feel any anger. Today, I do whatever I can for him.”
One of the aims of Angela’s research study was to provide data and information to help create public health policies for schizophrenics and their families. “Public policies still do not deal with the fact that patients are entitled to express their desires and exercise their right to have love and sexual relationships, start a family, have children and take care of their kids. Perhaps this is a leftover from the times when patients’ only alternative was to be sent to mental institutions,” says Angela Terzian. “At present, patients have access to treatments that ensure a better quality of life and social relationships. We have to understand that giving them medication is not enough. The patient has the right to decide whether he/she wants to have children or not, and the public health system must be prepared to respond to this demand, either by offering family planning advice, monitoring the children or carrying out social interventions to make up for the losses identified in the research study. If they have learning difficulties, for example, the schools must deal with this,” states the researcher.
People in the countryside
Two reports from patients, collected by the researcher, reveal the reality of patients who live in Brazil’s rural areas and how this reality can be changed. One report concerns 54-year old A.A.C., who had 11 children, despite her mental illness:
“People in the countryside are like that, they have lots of children and everybody looks after them: relatives, friends… My first child was born when I was 18; then three others came when I was 19, 21 and 22. And then I got sick and had to get treatment, and then my fifth child was born when I was 28. When my last child, now 18, was born, the doctor told me I’d better stop, because the way things were going, I could still have many more kids. I didn’t want to, but my husband thought it was best. They’re all healthy and now they help take care of me.”
The second report is from 23-year old M.P.N., who is married and the mother of a planned child. She takes medication to keep her illness under control:
“I got pregnant two years ago, I had already been taking a new drug for schizophrenia, I was doing fine, and my husband and I planned the pregnancy. My son is gorgeous, normal and very smart. We want to have more children, but I’m not sure when. I’m studying, I need to find a job to increase our income. Right now I’m on contraceptives and I take medication for my illness.”Republish