Distressing behaviour of schizophrenics at home Gopinath PS, Chaturvedi SK. Distressing behaviour of schizophrenics at home. Acta Psychiatr Scand 1992: 86: 185-188. The care of mentally ill people at home is being encouraged nowadays. As a result, the family members feel an increased burden of care and find it difficult to cope with the care of a schizophrenic patient at home. We interviewed the relatives of 62 schizophrenics systematically regarding the behaviour of the patients that was perceived to be distressful. This was done using the Scale for Assessment of Family Distress. It was noted that behaviours related to activity and self-care were perceived to be most distressful, and not aggressive or psychotic behaviour. Distress was more often reported by younger relatives and those with more education. The findings have implications in planning appropriate family intervention methods.
It is important to know the coping patterns of relatives of mentally ill people and their needs from mental health professionals. Freeman & Simmons (1) noted that relatives were most upset by severe mental symptoms, because the emergence of symptoms was the best predictor of rehospitalization. Later, Creer & Wing (2) and Doll (3) found that family members could tolerate a surprisingly high level of mental symptoms, but this tolerance was at the expense of a great deal of internal distress and family burden: physical, financial and emotional. In India, the majority of schizophrenics live with their families. Families are therefore taking on much of the burden of care for their mentally ill relatives. Further studies (4-6) found that nearly two thirds of the families of schizophrenics experienced some behavioural disturbance, with particularly severe disturbance in about 15% (7). A survey of schizophrenic patients and their families found that the behaviour that caused the most distress was offensive behaviour, rudeness and violence, but this was seen only in a minority of the patients (5). Further, it was reported that the behaviours most likely to cause severe distress were those directed at the supporters or were the product of active psychoses (such as unpredictable behaviour and odd ideas). Supporters were more resigned to chronic negative symptoms (5). Creer & Wing (2) found that the commonest behavioural problems reported by the family members of a schizophrenic patient were those associated with social withdrawal, such as little interaction, slowness, lack of conversation, few leisure interests, and self-neglect.
P. S. Gopinath, S. K. Chaturvedi Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India
Key words: schizophrenia; family: distress Dr. S.K. Chaturvedi, No. 8, Type IN, NIMHANS auarters, Byrasandra Campus, Jayanagar, Bangalore -560 01 1, India Accepted for publication November 30, 1991
Undoubtedly, it is important to systematically assess the symptoms perceived as distressful by the family members, to effectively execute psychoeducational and family intervention programmes. The objective of this study was to determine which symptoms were perceived to be distressful by the family and to determine the severity of such distress. Correlations were examined between certain demographic as well as clinical variables and the distressful symptoms. Material and methods
Sixty-two consecutive new cases diagnosed as schizophrenia by Research Diagnostic Criteria (8) were included from the outpatient clinic. Patients with organic problems, alcoholism, drug dependence or mental retardation were excluded. A first-degree relative or spouse accompanying the patient was interviewed after good rapport was established. Data were recorded on a form designed specifically for this purpose. The interview form recorded details regarding: identifying data of the patient; identifying data of the relative; demographic variables of patient and first-degree relative or spouse: age, sex, education, occupation, habitat, marital status and family type; clinical details, such as type of onset, precipitating factor, presence of family history or past episodes; and clinical diagnosis according to Research Diagnostic Criteria. 185
Gopinath & Chaturvedi The key relative accompanying the patient was interviewed regarding the patient’s behaviour at home. They were then administered the Scale for Assessment of Family Distress (9), which lists various behaviours that cause distress to the family members. Relatives were encouraged to mention as many behaviours as possible, irrespective of the amount of distress. Later, the relatives were asked to specify the amount of distress caused by each of the symptoms reported. Possible ways of handling such behaviours were discussed. The prevalence of various symptoms was derived. The severity of distress was rated on a 5-point scale (0: no distress; 1: minimal distress; 2: moderate distress; 3: marked distress; and 4: intense or very severe distress). The severity was also assessed by asking the individuals to describe the distress in terms of percentage distress (from 0 to 100: 0-no distress, 100-maximum possible distress). This was easier, especially for rural patients. The severity was categorized for analysis as follows:
No distress Minimal distress Moderate distress Marked distress Intense distress
0 1-24 25-49 50-74 75- 100
The distressful symptoms were grouped as follows: 1. Activity-related (4 items): does not do any work; does not do household tasks; has few leisure interests; and slowness in doing things. 2. Self-care-related (6 items): does not care for personal hygiene; does not sleep well; does not eat well; does not talk much, social withdrawal; and poor bowel or bladder control. 3. Aggression-related ( 5 items): beats and assaults others; tears clothes; breaks household articles; talks nonsense; and abusive. 4. Depression-related (7 items): talks less; suicide attempt; fearfulness; few leisure interests; social withdrawal; slowness; and sadness. The distressful behaviours were also grouped into distressful negative symptoms and distressful positive symptoms consisting of 7 and 12 items, respectively, depending on whether the behaviours were similar to negative symptoms or positive symptoms as described by Andreasen & Olsen (10).
Results The demographic characteristics ofthe schizophrenic patients and their relatives were as follows: the schizophrenic patients were more often younger than 35 years (77%), females (53 %), from an urban background (66‘:;), nuclear family (66”/,), and unmarried (53%). The relatives were above 35 years of age (48%), males (61%), educated (59%)),from nuclear families (74%) and married (84%). Regarding clinical diagnosis, 35 % had paranoid schizophrenia, 34 % had chronic schizophrenia and 11 % had an acute schizophrenic episode. The duration of illness was less than 6 months in 19 cases (30%) and more than 2 years in 42%. The majority had only one episode, and 25% had a positive family psychiatric history. The commonest behavioural disturbances were: not doing any work (64%), not doing household tasks ( 5 6 % ) , not caring for personal hygiene (53%) and slowness in 53 %. Some of the behaviours considered very distressful were: not doing any work (42%), few leisure interests (34%), talking less (29%), slowness (29%) and not caring for personal hygiene (29%). The interrelationships between the age and sex of patients and relatives and the commonest distressful behaviours were derived and significance of difference was tested by Fisher’s exact test. Only the significant associations have been given in Table 1. The lack of self-care was perceived as distressful more often in older patients and in women; lack of sleep was perceived distressful more often in older patients and was found to be significantly more distressing for younger relatives. Slowness was more often perceived as distressful in women. Point biserial and biserial correlation coefficients between the demographic characteristics of patients and relatives and the distressful behaviour groups were derived. Table 2 presents the correlation coefficients for patient’s and relatives’ education with the distressful behavioural groups. In educated patients, self-care-related behavioural disturbances were regarded as distressful. No other behaviour was significantly more distressful in any educational level or Table 1. Significant demographic correlations with behavioural problems ~
Behaviour
Variable ~
Statistical analysis
Demographic variables (of patient and relative) and distressful behaviours were correlated. Correlations between demographic variables and total distressful symptoms score were also computed.
~
~
p* ~~~
Does not care for personal hygiene
patients’ age patients’ sex
more severe in olderly more in women
0.03 0.04
Does not sleep well
patients’ age relatives’ age
more in elderly more by younger relatives
0.05 0.05
Slowness in doing things
patients’ sex
more in females
0.05
* 186
~~
Observation
Fisher’s exact test.
Schizophrenic behaviour Table 2. Perception of distressful behaviours: correlations with patients’ and relatives’ education Education of Behaviours Activity-related behaviours Self-care-related behaviours Aggressive behaviours Depression-related behaviours Distressful negative symptoms Distressful positive symptoms Total scale score
Patient
-0.05 -0.05 -0.10 -0.24 -0.22 -0.15 -0.39**
Relative
-0.31* -0.18* -0.12
-0.37” -0.34* -0.09
-0.36**
Correlations determined by point biserial coefficient and biserial coefficient. * Pi 0.05,
**P
It is important to know the coping patterns of relatives of mentally ill people and their needs from mental health professionals. Freeman & Simmons (1) noted that relatives were most upset by severe mental symptoms, because the emergence of symptoms was the best predictor of rehospitalization. Later, Creer & Wing (2) and Doll (3) found that family members could tolerate a surprisingly high level of mental symptoms, but this tolerance was at the expense of a great deal of internal distress and family burden: physical, financial and emotional. In India, the majority of schizophrenics live with their families. Families are therefore taking on much of the burden of care for their mentally ill relatives. Further studies (4-6) found that nearly two thirds of the families of schizophrenics experienced some behavioural disturbance, with particularly severe disturbance in about 15% (7). A survey of schizophrenic patients and their families found that the behaviour that caused the most distress was offensive behaviour, rudeness and violence, but this was seen only in a minority of the patients (5). Further, it was reported that the behaviours most likely to cause severe distress were those directed at the supporters or were the product of active psychoses (such as unpredictable behaviour and odd ideas). Supporters were more resigned to chronic negative symptoms (5). Creer & Wing (2) found that the commonest behavioural problems reported by the family members of a schizophrenic patient were those associated with social withdrawal, such as little interaction, slowness, lack of conversation, few leisure interests, and self-neglect.
P. S. Gopinath, S. K. Chaturvedi Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India
Key words: schizophrenia; family: distress Dr. S.K. Chaturvedi, No. 8, Type IN, NIMHANS auarters, Byrasandra Campus, Jayanagar, Bangalore -560 01 1, India Accepted for publication November 30, 1991
Undoubtedly, it is important to systematically assess the symptoms perceived as distressful by the family members, to effectively execute psychoeducational and family intervention programmes. The objective of this study was to determine which symptoms were perceived to be distressful by the family and to determine the severity of such distress. Correlations were examined between certain demographic as well as clinical variables and the distressful symptoms. Material and methods
Sixty-two consecutive new cases diagnosed as schizophrenia by Research Diagnostic Criteria (8) were included from the outpatient clinic. Patients with organic problems, alcoholism, drug dependence or mental retardation were excluded. A first-degree relative or spouse accompanying the patient was interviewed after good rapport was established. Data were recorded on a form designed specifically for this purpose. The interview form recorded details regarding: identifying data of the patient; identifying data of the relative; demographic variables of patient and first-degree relative or spouse: age, sex, education, occupation, habitat, marital status and family type; clinical details, such as type of onset, precipitating factor, presence of family history or past episodes; and clinical diagnosis according to Research Diagnostic Criteria. 185
Gopinath & Chaturvedi The key relative accompanying the patient was interviewed regarding the patient’s behaviour at home. They were then administered the Scale for Assessment of Family Distress (9), which lists various behaviours that cause distress to the family members. Relatives were encouraged to mention as many behaviours as possible, irrespective of the amount of distress. Later, the relatives were asked to specify the amount of distress caused by each of the symptoms reported. Possible ways of handling such behaviours were discussed. The prevalence of various symptoms was derived. The severity of distress was rated on a 5-point scale (0: no distress; 1: minimal distress; 2: moderate distress; 3: marked distress; and 4: intense or very severe distress). The severity was also assessed by asking the individuals to describe the distress in terms of percentage distress (from 0 to 100: 0-no distress, 100-maximum possible distress). This was easier, especially for rural patients. The severity was categorized for analysis as follows:
No distress Minimal distress Moderate distress Marked distress Intense distress
0 1-24 25-49 50-74 75- 100
The distressful symptoms were grouped as follows: 1. Activity-related (4 items): does not do any work; does not do household tasks; has few leisure interests; and slowness in doing things. 2. Self-care-related (6 items): does not care for personal hygiene; does not sleep well; does not eat well; does not talk much, social withdrawal; and poor bowel or bladder control. 3. Aggression-related ( 5 items): beats and assaults others; tears clothes; breaks household articles; talks nonsense; and abusive. 4. Depression-related (7 items): talks less; suicide attempt; fearfulness; few leisure interests; social withdrawal; slowness; and sadness. The distressful behaviours were also grouped into distressful negative symptoms and distressful positive symptoms consisting of 7 and 12 items, respectively, depending on whether the behaviours were similar to negative symptoms or positive symptoms as described by Andreasen & Olsen (10).
Results The demographic characteristics ofthe schizophrenic patients and their relatives were as follows: the schizophrenic patients were more often younger than 35 years (77%), females (53 %), from an urban background (66‘:;), nuclear family (66”/,), and unmarried (53%). The relatives were above 35 years of age (48%), males (61%), educated (59%)),from nuclear families (74%) and married (84%). Regarding clinical diagnosis, 35 % had paranoid schizophrenia, 34 % had chronic schizophrenia and 11 % had an acute schizophrenic episode. The duration of illness was less than 6 months in 19 cases (30%) and more than 2 years in 42%. The majority had only one episode, and 25% had a positive family psychiatric history. The commonest behavioural disturbances were: not doing any work (64%), not doing household tasks ( 5 6 % ) , not caring for personal hygiene (53%) and slowness in 53 %. Some of the behaviours considered very distressful were: not doing any work (42%), few leisure interests (34%), talking less (29%), slowness (29%) and not caring for personal hygiene (29%). The interrelationships between the age and sex of patients and relatives and the commonest distressful behaviours were derived and significance of difference was tested by Fisher’s exact test. Only the significant associations have been given in Table 1. The lack of self-care was perceived as distressful more often in older patients and in women; lack of sleep was perceived distressful more often in older patients and was found to be significantly more distressing for younger relatives. Slowness was more often perceived as distressful in women. Point biserial and biserial correlation coefficients between the demographic characteristics of patients and relatives and the distressful behaviour groups were derived. Table 2 presents the correlation coefficients for patient’s and relatives’ education with the distressful behavioural groups. In educated patients, self-care-related behavioural disturbances were regarded as distressful. No other behaviour was significantly more distressful in any educational level or Table 1. Significant demographic correlations with behavioural problems ~
Behaviour
Variable ~
Statistical analysis
Demographic variables (of patient and relative) and distressful behaviours were correlated. Correlations between demographic variables and total distressful symptoms score were also computed.
~
~
p* ~~~
Does not care for personal hygiene
patients’ age patients’ sex
more severe in olderly more in women
0.03 0.04
Does not sleep well
patients’ age relatives’ age
more in elderly more by younger relatives
0.05 0.05
Slowness in doing things
patients’ sex
more in females
0.05
* 186
~~
Observation
Fisher’s exact test.
Schizophrenic behaviour Table 2. Perception of distressful behaviours: correlations with patients’ and relatives’ education Education of Behaviours Activity-related behaviours Self-care-related behaviours Aggressive behaviours Depression-related behaviours Distressful negative symptoms Distressful positive symptoms Total scale score
Patient
-0.05 -0.05 -0.10 -0.24 -0.22 -0.15 -0.39**
Relative
-0.31* -0.18* -0.12
-0.37” -0.34* -0.09
-0.36**
Correlations determined by point biserial coefficient and biserial coefficient. * Pi 0.05,
**P
