Soc Psychiatry Psychiatr Epidemiol (2001) 36: 86±93

Ó Steinkopff-Verlag 2001

ORIGINAL PAPER J. U. Ohaeri

Caregiver burden and psychotic patients' perception of social support in a Nigerian setting

Accepted: 13 November 2000

j Abstract Background: In Nigeria, there are no national social welfare and community rehabilitation programmes for the mentally ill. Families have to bear the major burden of care. The present study aimed to assess the severity of indices of burden among relatives of 75 schizophrenics and 20 major affective disorder cases, to identify the factors associated with burden, to assess the relationship between caregiver burden and patients' perception of social support, and to compare these with equivalent data for cancer patients' relatives. Method: Caregivers were assessed, using a burden questionnaire and Goldberg's General Health Questionnaire (GHQ-12). Patients were assessed for perception of social support from the extended family. Results: Clinical severity and burden indices were similar for the psychiatric illness groups. However, relatives of patients with psychotic symptoms, uncooperative behaviour, marital instability and unemployment had signi®cantly higher GHQ scores; while patients from such families perceived a wider social support network. Financial burden was greater than effect on family routines. Disruption of family routines, GHQ scores and (inversely) size of family network patient expected support from, predicted global rating of burden. Although clinical severity and disruption of family routines for cancer patients were higher; relatives of psychiatric patients had higher GHQ scores, more family disharmony and greater social stigma. J. U. Ohaeri1 Department of Psychiatry, College of Medicine, University of Ibadan, Ibadan, Nigeria

Introduction In Western countries, the involvement of families in the care of severe mentally ill relatives grew from the late 1950s, with the movement towards deinstitutionalization, consequent on the introduction of effective antipsychotic drugs (van Wijngaarden et al. 2000). However, the success of the industrial social welfare state in these countries has resulted in numerous ®nancial and other supports for the patients, such as sheltered housing and employment, welfare payments and subsidized cost of treatment. It is estimated that 25% of discharged chronically mentally ill patients return home to their families in these countries (Talbot 1984; Rose 1996). In Nigeria and most developing countries, there are no national social welfare programmes, medical insurance schemes, or community-based rehabilitation programmes. Hence, all discharged patients are expected to return to their families. The family has to bear the burden of chronic mental illnesses, without assistance from the state. It is this social scene that has contributed to the differences in cost of mental disorders between developed and developing nations. In a study of the ®nancial cost of schizophrenia in Nigeria by our group, it was found that antipsychotic drugs accounted for 52.8% of the (direct and indirect) cost of illness (Sulaiman et al. 1997). In most reports from the Western world, before the wide use of novel

SPPE 430

Present address: 1 Department of Psychiatry, Psychological Medicine Hospital, Gamal Abdel Naser Road, Sabah Area, P.O. Box 4081, Safat, Kuwait, 13041 e-mail: [email protected] Fax/Tel.: +965-4899315

Conclusions: Disturbed behaviour is a greater determinant of severity of burden than psychiatric diagnosis; hence adequacy of treatment is a ®rst step in reducing caregiver burden. The tolerance shown by this group of relatives implies that they have strong potentials for playing useful roles in community care. Research and policy should consider measures to strengthen extended family network ties in developing countries.

87

`atypical' antipsychotics, drugs constituted 2±5% of the total cost of schizophrenia (Davies and Drummond 1994). In another Nigerian study of schizophrenics it was found that, although the greatest burden was scored for effect on family routines, rural families experienced signi®cantly greater ®nancial burden than those living in urban areas (MartynsYellowe 1992). In line with the ®ndings from developed countries that the psychosocial burden of schizophrenia is higher than that of some severe physical illnesses (Andrews et al. 1985), Ige (1993) compared the relatives of 50 schizophrenics, 47 asthmatics and 46 epileptics attending a Nigerian hospital, and reported that the families of schizophrenics experienced the greatest burden. Although most studies of family burden of mental illness have focused on schizophrenia (Loukissa 1995; Rose 1996), researchers that included affective disorder cases have noted that the degree of burden reported by caregivers did not differ signi®cantly across psychiatric diagnostic groups (Jenkins and Schumacher 1999; Perlick et al. 1999). There is robust evidence that caregivers' experience of burden is related to speci®c illness symptoms and abnormal behaviour, rather than to a psychiatric diagnosis per se (Schene et al. 1998; Ricard et al. 1999). There is a paucity of studies investigating the relation of caregiver burden with social support, especially the patients' perception of social support from the extended family, and it would be helpful to know whether the patients' af®rmation of support is related to caregiver burden (Rose 1996). Towards this end, Biegel et al. (1994) found that, in a sample of 103 family caregivers, lower amounts of perceived support from family members signi®cantly predicted higher levels of global caregiver burden. Also in a 1-year follow-up study of 159 relatives of schizophrenics, Magliano et al. (2000) arrived at the same conclusion. The present study sought to extend previous Nigerian works on caregiver burden in the following ways: 1. Comparing schizophrenia with major affective disorder cases ± thus examining the effects of psychiatric diagnosis on caregiver burden 2. Including patients at different levels of illness severity/ recovery ± thus examining the effects of psychiatric symptoms and behaviour 3. Assessing the relationship of caregiver burden with patients' perception of psychosocial support from the extended family ± thus examining how the patients' af®rmation of support is related to caregiver burden, and 4. Comparing these aspects of caregiver burden with the burden of relatives of cancer patients ± thus situating the burden of severe mental disorders in the context of a most severe physical illness.

The aims of the study were to assess the severity of indices of psychosocial and economic burden among ®rst-degree relatives of 75 schizophrenics and 20 major affective disorder cases, and to identify the factors associated with global rating of burden and the relationship of burden with the patients' perception of social support from the extended family. The results are compared with the ®ndings of a recent similar study of relatives of cancer patients in the same hospital (Ohaeri et al. 1999), and discussed in the light of similar studies from abroad.

Subjects and methods j Burden questionnaire The operational de®nition of ``burden'' followed that articulated by Platt (1985) for psychiatric patients, namely: the presence of problems, dif®culties or adverse events which affect the lives of patients' signi®cant others. In particular, ``burden'' was taken to refer to that element of hardship explicitly attributed to the patient (Gibbons et al. 1984). Using these principles from psychiatric researchers (Hoening and Hamilton 1966; Platt 1985; Schene et al. 1998), our group had articulated and successfully ®eld-tested a Nigerian culture-relevant caregiver burden questionnaire for cancer patients. This could easily be adapted for studying other chronic medical illness groups, by inserting the appropriate disease name (Ohaeri et al. 1999). The contents of the questionnaire were guided by the domains of burden highlighted by Platt (1985) and Hoening and Hamilton (1966) for psychiatric patients. Based on our experience of psychosocial problems of chronic mental illnesses in the country (Ohaeri et al. 1995a; Sulaiman et al. 1997), the questionnaire was accordingly modi®ed for the present study. Items of the questionnaire sought to elicit responses on severity of ``objective'' and ``subjective'' burden (Hoening and Hamilton 1966). Under objective burden, we recorded a broad range of adverse effects on the family, such as ®nancial loss; impairment of work ef®ciency; disruption of routine family activities (e.g. household work); disruption of family interactions (e.g. emotional climate at home) and physical health. Under subjective burden, we recorded what the relatives felt about the illness, and the general feeling of dif®culty they experienced in caring for the patient (details of the questionnaire are available from the author on request). Two typical items to elicit responses on key domains of objective burden are as follows: 1. Has the patient lost any sort of revenue or ®nancial bene®ts (e.g. loss of job, loss of working hours for business or going to farm or going to sell at the market, etc.)? Response options were: No such losses/Minor loss of revenue or bene®ts/Moderate loss of income/Major loss of income, which has greatly affected the family. 2. Has taking care of the patient caused a neglect of the attention that should be given to other members of the family (e.g. spouse leaving children at home in order to stay in hospital with the patient or take patient to other places of care, etc.)? Response options were: Not at all/Occasionally so/Frequently so/All the time. The items on objective burden, therefore, involved four response options with increasing severity as above (i.e. score of 0±3). This section consisted of 12 items. Two typical items to elicit responses on subjective burden are as follows: 1. Does the family feel embarrassed that so many people have to know that the patient has this sickness? Response options were: Not at all/Occasionally so/Regularly so/It was so initially, but we have overcome that feeling now.

88 2. On the whole, how much dif®culty do you have coping with this patient's condition? Response options were: None at all/Mild dif®culty/Moderate dif®culty/Severe dif®culty.

operation with clinic attendance and compliance with follow-up medication at home were also assessed.

This section of the questionnaire consisted of eight items. Disease severity was quanti®ed by collecting information on frequency of hospital attendance and hospital admissions in the past 12 months, frequency of psychotic symptoms in the past 3 months (Ricard et al. 1999) and how frequently the patient is taken to sleep at church for prayers, and to the traditional (native) healer's for treatment (Famuyiwa and Asuni 1991). The last part of the questionnaire consisted of the 12-item version of Goldberg's (1972) General Health Questionnaire (GHQ-12). The GHQ is a screening instrument to delineate probable psychiatric caseness. It has been used by our group in previous hospital and community-based studies (Ohaeri and Odejide 1993, 1994).

j Procedure

j Questionnaire for patients' perception of social support from the extended family In a recent study, we highlighted the perception of schizophrenic and major affective disorder patients of the categories of relatives whom they regarded as family members ± beyond the categories of spouse and children ± and the types of support they had received from these members in the past year (Ohaeri 1998). First, the questionnaire assessed the number of categories of relatives constituting the extended family network (e.g. uncles, ®rst cousins, etc), thus de®ning the size of extended family network for each patient. Then the questionnaire assessed the size of family network for the following domains of support: 1. Those in whom the patient tended to con®de to solve problems related to the illness; 2. Those from whom the patient expected support 3. Those from whom the patient actually received material and emotional support, and 4. Those who regularly interacted with the patient in the past 3 months. Summary scores were generated and used for correlation analysis with indices of caregiver burden. The validity and reliability of that questionnaire have been presented (Ohaeri, available from the author on request). Only 41 patients were interviewed with this questionnaire. We have already reported on the highly signi®cant reliability indices of the burden questionnaire when used for relatives of cancer patients (Ohaeri et al. 1999). The validity of this slightly modi®ed version for relatives of psychiatric patients was tested by being presented for comments to senior psychiatrists and nurses in the specialty. They all made complimentary comments on the questionnaire. The questionnaires were all translated into the local Yoruba (also the language of interviewer) by the method of back translation. j The psychiatric patients The patients ful®lled ICD-10 (World Health Organization 1992) criteria for diagnosis of one of the severe mental disorders, namely, schizophrenia, bipolar disorder with psychotic symptoms and recurrent severe depression. In order to have patients with reasonable stability of psychiatric diagnosis and suf®cient experience of the illness and its burdens, those included needed to have had at least 2 years' duration of illness, and to have regularly attended our hospital for follow-up care during that time, as shown by their case notes (Ohaeri et al. 1995a; Jenkins and Schumacher 1999). In order to de®ne categories of well being, patients at three levels of severity of illness/recovery were recruited, viz: (1) inpatients; (2) outpatients with stable psychotic symptoms, not requiring hospitalization; (3) outpatients with no psychotic symptoms, attending clinic for routine follow-up. The patient's co-

The study involved interview of ®rst-degree relatives who accompanied consecutive patients to the psychiatric clinic of the University College Hospital (UCH), Ibadan, Nigeria, for treatment. Relatives of patients in a stable condition were interviewed at the clinic, while those of patients requiring admission were interviewed 2 days later at the ward, after completion of admission formalities. To be included in the study, the patient had to be accompanied to hospital by adult relatives who were directly involved in informal care giving roles at home (either living with the patient or seeing the patient regularly). In Nigerian culture, it is quite common for patients to be accompanied to hospital by relatives (Ohaeri 1998). Also, as is usual in this culture for this type of study, all the patients and relatives who were approached consented to be interviewed. Each subject was interviewed privately. All the interviews were conducted by a senior female research nurse, who had also interviewed the relatives for the earlier study of cancer patients and their relatives. She was trained in the use of the questionnaire by the author. Data collection commenced when the researcher was satis®ed that she had achieved high competence in reading out the items of the questionnaire in Yoruba (the local language), and rating the responses. In consideration of the relatively low literacy rate in our country, and in order to make for uniformity, all the subjects had the items of the questionnaire read out to them, and the research nurse rated their responses. j Data analysis Data were analysed by SPSS computer package, using frequency counts and chi-square tests (with Yates' correction, where necessary) for categorical variables. Continuous variables were analysed by means and t-tests, one-way analysis of variance (with Tukey's method of multiple comparison), Pearson's correlation, and multiple regression analysis, at a 5% level of statistical signi®cance. Caregivers of patients with schizophrenia were compared with those of patients with affective disorders. Caregiver burden indices were analysed with regard to differences in patients' levels of illness/recovery, cooperation with clinic attendance and perception of social support from the extended family network. Multiple regression analysis was used to delineate factors that could predict felt subjective burden, using the global item of how much dif®culty the caregiver experienced in caring for the patient as dependent variable. The summary burden score for each domain of objective burden (e.g. ®nancial) was derived by adding up the scores on the relevant items. As these domains did not contain equal numbers of items, raw scores were weighted by dividing the total scores by the number of items. The severity of the patient's clinical condition was quanti®ed as earlier highlighted, and operationally de®ned as ``clinical severity burden''. Hence the following burden summary scores were obtained: 1. Clinical severity burden score: a measure of clinical severity of the illness 2. Financial burden score: a measure of family's ®nancial distress 3. The weighted ®nancial burden score was then computed by dividing the ®nancial burden score by ®ve (i.e. number of items assessing ®nancial burden) 4. The family routine burden score, a measure of disruption of family routines (e.g. dif®culty in keeping to household work), was derived by adding up the score on four related items 5. The family disharmony score, a measure of the level of cordial relationships at home and with neighbours (e.g. quarrels, feelings of isolation by neighbours) was derived by adding up the score on three related items

89 6. The weighted family burden score was derived by adding up the routine burden score and disharmony score, and dividing by seven.

Results j Socio-demographic characteristics of psychiatric patients and their caregivers (Table 1) Mothers constituted the most frequent category of caregivers (n ˆ 35; 36.8%), and most caregivers (81%) lived with the patients. There were no significant gender differences (except that female patients were more likely to be married). Most caregivers (64.2%) were gainfully employed as junior civil servants (21.1%) or senior professionals/private businesses (43.1%). Most patients (86.3%) lived with ®rstdegree relatives, who were typically married (66.3%).

gender differences in clinical characteristics. In the past 3 months, 46 patients (48.4%) had experienced psychotic symptoms several times weekly/daily; but the majority (n ˆ 59; 62.1%) had not been hospitalized in the past year. There were no signi®cant differences between the schizophrenic and major affective disorder cases for age of patients (36.8, SD 13.5 vs 38.1, SD 14.5; P > 0.05); duration (years) of illness (9.9, SD 7.4 vs 8.05, SD 6.6; P > 0.05); weeks of symptoms in the past 3 months (3.9, SD 2.7 vs 3.08, SD 2.2); or age of caregivers (45.6, SD 16.2 vs 51.5, SD 16.6; P > 0.05). There were 19 inpatients (20%) and 55 outpatients (57.9%) with stable psychotic symptoms, and 21 outpatients (22.1%) without psychotic symptoms. Summary scores of burden (Table 2) for the two illness groups and gender showed no signi®cant differences.

j Clinical characteristics

j Severity of psychiatric caregiver burden (Tables 2 and 3)

Signi®cantly more females (33.3% of 42) than males (11.3% of 53) had affective disorders (v2 ˆ 6.8, df ˆ 1, P ˆ 0.009). There were no other signi®cant

The summary scores of clinical severity for the inpatients (6.3, SD 1.5) and outpatients with psychotic symptoms (6.1, SD 1.5) were signi®cantly higher than

Table 1 Characteristics of psychiatric patients and caregivers

Variables Patient characteristics Age Mean (SD) Range 15±30 yrs: n (%) 31±40 yrs: n (%) >65 yrs: n (%) Occupation Unemployed/farmer/petty trader: n (%) Junior worker/school teacher: n (%) Level of education No formal/primary school: n (%) Secondary school: n (%) Marital status Married: n (%) Caregivers' characteristics Mean age (SD) Occupation Unemployed/farmer/petty trader: n (%) Junior worker/school teacher: n (%) Level of education No formal/primary school: n (%) Secondary school: n (%) Marital status Married: n (%) Living arrangements Patient lives with parent/spouse/sibling Caregiver lives with patient Caregiver's relationship with patient Parent/spouse/sibling How long caring for patient (yrs): mean (SD)

Men (n = 53)

Women (n = 42)

t (v2)

df

P-value

34.8 (12.8) 15±74 24 (45.2) 18 (33.9) 3 (5.6)

39.8 (14.3) 16±75 12 (28.6) 13 (30.9) 5 (11.9)

1.8

93

0.08

27 (50.9) 6 (11.3)

19 (45.2) 5 (11.9)

4.2

3

0.24

15 (28.3) 15 (32.1)

12 (28.6) 14 (33.3)

0.39

3

0.9

12 (22.6)

26 (61.9)

46.7 (16.7)

47.3 (15.6)

0.2

93

0.9

17 (32.1) 12 (22.6)

17 (40.5) 8 (19.0)

0.73

2

0.7

20 (37.7) 15 (28.3)

19 (45.2) 9 (21.4)

1.4

3

0.7

35 (66.6)

28 (66.7)

45 (84.9) 42 (79.2)

37 (90.0) 35 (83.3)

44 (83.0) 7.3 (5.7)

33 (78.6) 9.5 (7.0)

1.6

93

0.7

90 Table 2 Comparison of mean (SD) summary scores of caregiver indices of clinical severity and other burdens between schizophrenia and affective disorders (GHQ-12 12-item General Health Questionnaire)

Burden indices

All (n = 95)

Schizophr. (n = 75)

Aff. Dis. (n = 20)

t

P-value

1. 2. 3. 4. 5. 6. 7. 8.

5.9 (1.6) 11.0 (4.5) 2.2 (0.9)a,b 7.5 (2.8) 4.5 (2.0) 1.7 (0.5)a 1.8 (0.6)b 1.9 (2.6)

6.1 (1.5) 11.2 (4.5) 2.2 (0.9) 7.6 (3.0) 4.4 (2.0) 1.7 (0.6) 1.9 (0.7) 1.9 (2.6)

5.4 (1.7) 10.5 (4.4) 2.1 (0.9) 7.2 (2.0) 4.9 (1.9) 1.7 (0.5) 1.7 (0.5) 2.2 (2.9)

1.7 1.1 1.1 0.6 0.9 0.1 0.4 0.4

0.09 0.5 0.5 0.5 0.4 0.9 0.5 0.7

Clinical severity Financial burden Weighted financial burden Family routine burden Family disharmony score Weighted family routine burden Weighted subjective burden GHQ-12 score

a,b Weighted financial burden was significantly higher than weighted family routine burden score (t = 4.6, P = 0.0001) and weighted subjective burden (t = 3.36, P = 0.008)

Table 3 Frequency of indices of clinical severity and psychosocial burden in 95 caregiver relatives of patients with schizophrenia or affective disorder, presented as absolute numbers (n) with percentages in parentheses Indices

n = 95

1. Moderate/major loss of revenue by patient because ill 2. Moderate/major loss of revenue by family member on patient care 3. Expenditure incurred has moderate/major impact on family 4. Family taken moderate/major loan/sold property 5. Patient frequently/cannot attend work/school 6. Patient frequently has difficulty with household work 7. Patient's illness frequently disrupted caregiver's work 8. Frequently caring caused neglect of other family members 9. Caring never caused quarrel or disagreement at home 10. Family does not feel secluded/isolated/stigmatised 11. Global rating of family difficulty with coping No difficulty Mild difficulty Moderate difficulty Severe difficulty

58 (61.1) 36 (37.9) 53 (55.8) 22 (23.2) 34 (35.8) 30 (31.6) 11 (11.6) 9 (9.5) 56 (58.9) 73 (76.8) 16 21 37 21

(16.8) (22.1) (38.9) (22.1)

those for outpatients without psychotic symptoms (4.8, SD 1.5) (F ˆ 5.8, df ˆ 2/90, P ˆ 0.004). The mean GHQ-12 scores (i.e. mental distress) for caregivers of inpatients (3.29, SD 3.2) and sick outpatients (2.0, SD 2.65) were signi®cantly higher than those of outpatients without psychotic symptoms (0.7, SD 1.38) (F ˆ 4.9, df ˆ 2/90, P ˆ 0.009). Also, relatives of patients who did not cooperate to attend clinic had higher GHQ-12 scores (3.2, SD 2.9) than relatives of patients who readily cooperated in attending the clinic (1.6, SD 2.4) (t ˆ 4.9, P ˆ 0.027). However, there were no signi®cant group differences in summary scores for ®nancial burden, disruption of family routines and family disharmony scores (P > 0.05). For the entire cohort, the highest burden was ®nancial (Table 2). When the data on psychiatric patients' perceptions of support were analyzed with respect to their clinical status, it was found that the perceived material support network of inpatients and outpatients with psychotic symptoms (5.0, SD 1.4 and 5.4, SD 2.1, respectively) were rated almost signi®cantly higher than those of outpatients without psychotic

symptoms (3.7, SD 1.9) (F ˆ 3.02, P ˆ 0.06). Also, the patients with symptoms tended to perceive a wider social support network (6.0 and 5.5, respectively) than the outpatients without symptoms (4.2, SD 1.6) (F ˆ 2.5, P ˆ 0.09). In addition, patients who did not cooperate to attend clinic perceived a wider regular interaction network (3.3, SD 1.5) than patients who cooperated in attending clinic (1.9, SD 1.1) (t ˆ 4.4, P ˆ 0.04). Table 3 shows that, although 60 caregivers (61%) admitted moderate/severe global rating of dif®culty in caring for the patient, the majority of families lived peacefully (58.9%) and did not feel socially stigmatized (76.8%).

j Factors associated with burden among psychiatric caregivers (Table 4) One-way analysis of variance (ANOVA) was used to compare differences in summary burden scores across marital, occupational and educational groups. The only signi®cant differences were as follows: 1. Caregivers of patients who were separated/ divorced, experienced signi®cantly higher family routine burden (F ˆ 4.6, P ˆ 0.01) and ®nancial distress (F ˆ 4.6, P ˆ 0.01) than did caregivers of patients who were married. 2. Caregivers who were unemployed experienced signi®cantly higher ®nancial burden (F ˆ 6.1, P ˆ 0.003), subjective burden (F ˆ 3.35, P ˆ 0.039) and GHQ-12 scores (F ˆ 7.5, P ˆ 0.001). Also, global rating of dif®culty with caring for the patient was signi®cantly more frequently rated as severe when the patient was separated/divorced than when the patient was either single or married. Table 4 shows that, using the summary scores in Pearson's correlation analysis, global rating of dif®culty with caring for the patient was signi®cantly directly correlated with objective and subjective burden indices (P ˆ 0.001), GHQ-12 scores (P ˆ 0.015), and inversely correlated with the patient's perception of extended family support (P ˆ 0.015). Caregiver GHQ-12 scores were signi®cantly correlated with family ®nancial distress.

91 Table 4 Factors associated with burden among 95 caregiver to psychiatric patients: correlation coefficients (r) (t) and P-values Factors/variables

r

t

P-value

Relation between global rating of difficulty by caregiver and: Family financial distress 0.48 3.47 Disruption of family routines 0.43 3.04 Weighted family burden score 0.48 3.51 Weighted subjective burden 0.32 2.15 Caregiver's GHQ-12 score 0.39 2.77 Patient's expectation of support from network )0.37 2.48 Patient's occasional interaction network )0.34 2.17

0.001 0.005 0.001 0.04 0.015 0.015 0.04

Relation between caregiver perception of clinical severity and: Duration of illness 0.35 2.37 GHQ-12 score of caregiver 0.32 2.18

0.02 0.04

Relation between Caregiver GHQ-12 score and: Family financial distress

0.04

0.31

2.12

In view of these multiple relationships, the data were subjected to multivariate statistics. In multiple regression analysis including burden indices and demographic and clinical variables, global rating of burden was signi®cantly predicted only by weighted family burden score (t ˆ 3.1, P ˆ 0.003) and GHQ-12 score (t ˆ 2.4, P ˆ 0.02); and these accounted for 59% of the variance. Of the indices of patient's perception of family support, only the index on expectation of support from extended family signi®cantly (inversely) predicted global rating of family burden (t ˆ )2.4, P ˆ 0.02), accounting for 37% of the variance. That is, the greater the patient's expectation of support from the extended family network, the less the global feeling of burden by the caregiver. Compared with the results of a similar study of caregivers of patients with cancer in the same hospital (Ohaeri et al. 1999), we found that, although the summary score on disease clinical severity was much higher for cancer (7.6, SD 1.8, vs 5.9, SD 1.6 for this study), the two groups of caregivers had similar weighted ®nancial burden scores (2.1, SD 0.9 for cancer, vs 2.2, SD 0.9) and weighted family burden scores (1.9, SD 0.5 for cancer, vs 1.8, SD 0.6). However, caregivers of psychiatric patients had a higher mean GHQ-12 score (especially relatives of affective disorder cases: mean 2.2, SD 2.9) than cancer caregivers (1.3, SD 1.9). Although a higher proportion of cancer caregivers (83.4% of 73) than psychiatric caregivers (61%) rated global dif®culty with caring as moderate/severe, and more cancer caregivers (68.4% vs 55.8%) had incurred signi®cant ®nancial costs, a signi®cantly higher proportion of psychiatric caregivers admitted that caring for the patient had caused quarrels at home (41% for psychiatric vs 4% for cancer) and social stigma (23.2% for psychiatric vs 1.4% for cancer). Accordingly, the family disharmony score for psychiatric caregivers (4.5, SD 2.0) was appreciably higher than that for cancer caregivers (3.4, SD 1.2).

Discussion The ®ndings are not generalizable, since the subjects were not a representative sample of the general population. However, the socio-demographic and clinical characteristics of the patients were similar to those of previous studies of psychotic patients in our locality (Ohaeri 1993; Ohaeri et al. 1995b). Another limitation of the study is the fact that only one caregiver was interviewed per family. Following the example of previous workers, we tried to make up for this, ®rst by interviewing those most closely involved in care giving roles (Jenkins and Schumacher 1999; Perlick et al. 1999), and second, by the attempt to correlate patient's account with caregiver burden. In a comparative study of key relatives and other relatives of patients with schizophrenia, the levels of burden and risk of developing psychiatric symptoms were not signi®cantly different in the two family groups (Magliano et al. 1999). However, there is evidence to suggest that families of psychiatric patients experience impaired family functioning (Miller et al. 1986; Keitner et al. 1987). In line with this view, the mean GHQ12 score of the caregivers in this study (1.9, SD 1.6) was at least twice as high as that of civil servants (0.81, SD 1.6) who were involved in a recent general population study in the locality (Ohaeri and Sunmola 1994). It is reasonable to expect that, being a terminal illness, cancer would be rated as clinically more severe. The conclusion from this comparative exercise is that as chronic, recurrent, debilitating severe mental disorders with considerable social stigma (Crisp et al. 2000), schizophrenia and major affective disorders seem to be associated with greater subjective caregiver burden than cancer. This is an important point for policy makers to consider in prioritizing resource allocation in healthcare delivery. One comparable study from developed countries is the UK study (Gibbons et al. 1984), in which the de®nition of overall (global) distress score was similar to the present study's global rating of dif®culty with caring for the patient. They found that for 39% of caregivers, ®nancial hardship had occurred (compared with this study's 55.8%) and 47% of UK caregivers experienced moderate/severe strain (compared with this study's 61%). This indicates that the objective caregiver burden of schizophrenia and affective disorder is probably greater in Nigeria than in the UK. This is not a surprising ®nding, considering the various supports of the industrial social welfare state in the UK, which are absent in Nigeria. However, compared with the reports from north America and western Europe, the Nigerian psychiatric patients were much more likely to be living at home with their families, and their parents were more likely to be married (Loukissa 1995; Rose 1996). Also from the responses of the

92

patients, the social support of the extended family seemed to be evident, in line with the ®ndings of a previous study (Ohaeri 1998). Perhaps the positive impacts of these indices of family stability were amelioration of subjective burden (majority of caregivers denied quarrels at home and social stigma) and sharing of roles (less than 12% experienced regular disruption of work and neglect of attention to other family members). This indicates that, in spite of the objective burden they experienced, these families were mostly tolerant (Hoening and Hamilton 1966), and therefore have the potential for playing useful roles in community management of their mentally ill relatives. It is noteworthy that schizophrenia and major affective disorders were associated with markedly similar burden scores, while caregivers of patients who had uncooperative behavior and had psychotic symptoms showed signi®cantly higher GHQ-12 (i.e., mental distress) scores. This result was somewhat surprising because, although patients with psychotic symptoms had higher clinical severity scores, they had similar scores for weighted ®nancial burden, family routine burden, and family disharmony, compared with caregivers of patients without psychotic symptoms. One implication of this ®nding is that brief direct measures of mental distress, such as the GHQ-12, are probably more sensitive in detecting subjective distress, especially in settings where families have developed tolerant attitudes to the patient's condition. Another implication is that adequacy of treatment should be relentlessly pursued as a ®rst step in reducing caregiver burden. This is more so in view of the fact that the social indices of poor disease outcome, such as patient's marital instability and unemployment, were associated with signi®cantly higher caregiver ®nancial distress, greater disruption of family routines, and higher GHQ-12 scores. The policy implication for pharmacotherapy is that, as a way of reducing caregiver burden in developing countries, manufacturers and governments should ®nd ways of reducing the enormous cost of the novel `atypical' antipsychotic drugs, so that with their higher potency and better side effect pro®le, they can be made available for early effective intervention, so as to reduce the high proportion of subjects with persistent chronic psychotic symptoms (Ohaeri 2000). Another highlight of the ®ndings is the interesting interaction among patient's perception of social support from the extended family network, presence of psychotic symptoms, and caregiver mental distress. Although caregivers of patients with psychotic symptoms showed higher GHQ-12 scores, patients from such families perceived a wider extended family network of social support. One interpretation of this ®nding is that the families of psychotic patients were proactive in obtaining help from the wide network of relatives, in an attempt to cope with the problem.

Instead of giving up and abandoning the patient in frustration, they sought assistance from the extended family, and various members responded to their call; hence, the patient's perception of social support. In support of this interpretation, Rose (1996) noted that, as the chronic nature of the illness becomes apparent, family members may respond by increasing their efforts to ®nd support for themselves and appropriate treatment for the patient. She further noted that families who coped effectively with mental illness were better educated, articulate and actively engaged in seeking help and information and had resources that enabled them to make efforts to take care of themselves. Although the results of a few studies did not ®nd that social support was a signi®cant predictor of burden (Noh and Avinson 1988), the majority of studies indicated that practical social support ameliorated family burden (Magliano et al. 2000). The ®ndings of this study support the salutary role of social support, because a signi®cant predictor of caregiver global rating of burden was the size of family network from whom the patient expected support. One implication of these ®ndings for developing countries where there are no immediate hopes for national social welfare programs is that researchers and policy makers should focus on articulating measures that can strengthen extended family relations, as a way of providing social support and reducing caregiver burden (Wood et al. 1998). Although the ®nancial burden score was highest, the only signi®cant predictors of global burden were disruption of family routines and high GHQ-12 scores. In the previous Nigerian study of the burden of schizophrenia, Martyns-Yellowe (1992) noted that the greatest burden was scored for effect on family routines, followed by effect on family interaction; although the only signi®cant difference between rural and urban families was that rural dwelless had higher ®nancial burden. One interpretation of these results is that, in a country with severe economic hardship, even where the caregivers seem to be tolerant, the care giving role nevertheless diminishes family ef®ciency in social performance, because of the disruption of routines of economically active members (no matter how minimal), and the psychic distress of living with the patient's psychotic symptoms (Charkrabarti et al. 1992; Rose 1996). In conclusion, the ®ndings of this study support the impressions in the literature that: 1. For the severe mental disorders, the presence of psychotic symptoms, patient's uncooperative behavior, and social indices of poor disease outcome contribute more signi®cantly to caregiver subjective burden than psychiatric diagnosis per se 2. Compared with chronic severe physical illnesses, such as cancer, severe mental disorders are associ-

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ated with comparable levels of objective burden, but much higher levels of subjective burden and mental distress 3. Although there is greater evidence of family stability and support from the extended family, the care giving role in developing countries has the disadvantage of lack of national social welfare programs; and there is probably greater objective caregiver burden than in developed countries 4. Practical social support that is evident to the patient has the potential to reduce caregiver burden.

The implications of these conclusions have been highlighted. j Acknowledgements Mrs. G. Oyin Awosika interviewed the subjects; Miss `Tosin Cole played an invaluable role in data collection and analysis. I thank the relatives and patients who gave of their time to be interviewed. This study was partly supported by a University of Ibadan Senate research grant.

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