Assessing the opinions of relatives on the causes and social consequences of different mental disorders: Are instruments cross-culturally valid?

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Psychiatry Research 158 (2008) 344 – 355 www.elsevier.com/locate/psychres

Assessing the opinions of relatives on the causes and social consequences of different mental disorders: Are instruments cross-culturally valid? Thomas W. Kallert ⁎, Ines Nitsche Department of Psychiatry and Psychotherapy, University Hospital Carl Gustav Carus, Dresden University of Technology, Dresden, Germany Received 11 April 2004; received in revised form 18 May 2005; accepted 12 January 2006

Abstract Obtaining valid information about the opinions of relatives on the causes and social consequences of mental disorders should be an important component in specifically tailoring therapeutic interventions for relatives according to their needs. The available range of instruments is small, however, the most prominent being the Italian Questionnaire on the Opinions of the Family (QOF), developed specifically for schizophrenic disorders. The German validation study of this instrument sought to determine whether the subscale structure of the QOF can be replicated in a group of relatives (N = 161) of patients with schizophrenic disorders as well as recurrent depressive and bipolar disorders. Results demonstrate that the original QOF subscales cannot be transferred to groups of relatives of patients with affective disorders, nor to a German group of relatives of patients with only schizophrenic disorders. Therefore, a German version of the QOF was created. Using this modified version of the instrument, researchers established a three-factor solution differentiating the opinions of relatives on chronic mental disorders into three components, reflecting orientation towards pathology, towards normality and towards optimising resources for treatment. None of these factors showed significant relationships with the relatives' causal attributions about mental disorders. Further research is needed to establish crossnationally valid versions of such instruments. © 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Relatives; Opinions; Mental disorders; Questionnaire; German version; Cross-cultural validity

1. Introduction Opinions of a patient's relatives on the causes and social consequences of mental disorders play an important role, influencing the experience of burden of care, the development of coping strategies, and the decision to seek ⁎ Corresponding author. Department of Psychiatry and Psychotherapy, University Hospital, Dresden University of Technology, Fetscherstraβe 74, D-01307 Dresden, Germany. Tel.: +49 351 4583561; fax: +49 351 4585380. E-mail address: [email protected] (T.W. Kallert).

support as well as to utilize mental health services (Baronet, 1999; Barrowclough et al., 1987; Budd et al., 1998; Jungbauer et al., 2001; Magliano et al., 2000). Because such opinions are not sharply distinguished conceptually from causal attributions or might at least be influenced by these, the linkage with expressed emotion as a well-validated predictor of clinical outcome for several psychiatric conditions (Butzlaff and Hooley, 1998) is also important. A recent review of 13 studies examining the relationship between expressed emotion and the attributions of carers regarding patients' behaviours (Barrowclough and Hooley, 2003) supports the

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T.W. Kallert, I. Nitsche / Psychiatry Research 158 (2008) 344–355

conclusion that carers' beliefs may play a significant role in the relapse process in a variety of ways. Therefore, obtaining valid information on these opinions seems crucial to developing therapeutic interventions for relatives tailored more specifically to their needs (Mannion et al., 1994; Stromwall and Robinson, 1998). Furthermore, most recent research in five Western and Central European countries on the burden of care imposed on relatives by the treatment of acute mental disorders in acute day hospital and inpatient settings (Schützwohl et al., submitted for publication) clearly demonstrates that some significant differences in experiencing this burden might be attributed to culture-specific factors at the level of cognitive attributions. This supports results of other recently published studies on culture-specific attributions, consistent with previous research showing that culture can shape the ways in which families construe schizophrenia, for example, which in turn may relate to the coping styles of families with the illness (Guarnaccia et al., 1992; Jenkins and Karno, 1992). In a study on attributions, emotions, and help-giving of a smaller sample of relatively non-acculturated Latino-Americans toward a family member with schizophrenia (Weisman et al., 2003), 40% of the participants implicated God in their causal attributions, and tended to use religion in a manner that offered hope and comfort and might conceivably lead to lower levels of anger and frustration to the patient, thus contributing to the low level of expressed emotion in this (and other Latino) sample(s). Another study examined the role of family factors in the course of schizophrenia of Mexican-American and Anglo-American patients and families (López et al., 2004). The data indicated that for Mexican-Americans, family warmth is a significant protective factor, whereas for Anglo-Americans, family criticism is a significant risk factor. These findings not only show that sociocultural context shapes the pathways by which family processes are related to the course of illness, but also that families can serve as buffers to relapse for MexicanAmerican patients. These results corroborate findings from Italian (Bertrando et al., 1992) and Yugoslavian (Ivanović et al., 1994) studies. Thus arises the need for a cross-culturally reliable and valid method for assessing these opinions of a patient's relatives on the causes and social consequences of mental disorders. A literature search1 of the last 1

For our literature search in the PubMed and Medline databases since 1990, we used the terms “relative” OR “key-relative” and “mental illness” OR “mental disorder” in combination with “opinion” OR “attitude” OR “causal attribution” and “measurement”.

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decade reveals a significant lack of research on this subject, however. A small number of methodological approaches, ranging from qualitative in-depth interviews (Stolle and Stark, 1994), to assessments within the expressed emotion concept (Wiedemann et al., 2002), to self-administered questionnaires (Ohaeri and Fido, 2001), have been developed. Only the last of these methodological approaches produced a standardized instrument for relatives of patients with schizophrenia on the causes and social consequences of the disorder: the Questionnaire on the Opinions of the Family (QOF) developed by the Italian research group of Magliano et al. (Magliano et al., 1999a). To determine whether the QOF could be used and which version of the instrument would be applicable, researchers conducted a validation study of the QOF in the initial 9-month phase of a German study assessing the psychosocial burden on and attitudes towards disorders of relatives of patients with chronic affective and schizophrenic disorders during community treatment (Kallert, 2002). Starting in 2003, the research specifically addressed the following question: Can the subscale structure of the QOF be replicated in a group of German relatives of patients with recurrent depressive, bipolar and schizophrenic disorders? This article reports the results of this validation study, and presents implications for future research in this field. 2. Methods 2.1. Brief description of the Questionnaire on the Opinions of the Family (QOF) The original Italian version of the QOF was developed from a list of 35 literature-based statements exploring the opinions of relatives of patients with schizophrenia on treatment, origin and causes of the disorder, social distance from the patients, and social restriction. Each item is rated on a 3-point scale (‘completely true,’ ‘partially true,’ ‘not true’), with an additional choice of ‘I don't know’ for each item. In Italy, 103 relatives living with 79 patients with an ICD10 diagnosis of schizophrenia participated in the study. The mean age of the relatives was 55.9 (± 14.8) years; 38% were men; 74% were parents, 6% spouses, 20% brothers or sisters; 33% had attended junior high school, 25% high school, 7% had a university degree, and 3% had not completed primary school education; 57.5% lived in a large urban area, 23.5% in a town, and 3% in a rural area. The mean age of the participating patients was 32.7 (± 6.9) years; 71% were men; average duration

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of illness was 10.4 (± 5.9) years; and average number of previous hospital admissions was 4.8 (± 5.6). The relatives a) reviewed wording, relevance, and missing aspects of these statements; b) reported on the comprehensibility and appropriateness to describe their opinions, using a 10-point scale; and c) performed a face-validity study (time-span to administer the questionnaire, need for supervision and help during the compilation). Ten days after the initial compilation, 62 relatives participated in a test–retest reliability study. Based on the results of these procedures, three items were deleted because of low item-scale correlation, low variance or assessment as not appropriate. The remaining items (plus two open questions on the causes contributing most to onset and current duration of schizophrenia, and two ‘yes/no’ items on treatment provided) were grouped into four subscales using Cronbach's alpha analysis: a) treatments, comprising six items referring to the need to be informed about schizophrenia, its treatment and their utility (e.g. “Opportunity for X to be informed by psychiatrists on drugs and their side effects,” and “Opportunity of X's relatives to be informed by psychiatrists on patient's mental disorder”); b) social restrictions, comprising eight items on political, social and civil rights of people with schizophrenia (e.g. “The law should allow a woman to divorce her husband as soon as possible if he suffers from schizophrenia,” and “People with the same problems as X should not vote”); c) social distance, comprising six items on the ability of psychiatric patients to perform social and occupational roles compared with other people (e.g. “X is an unpredictable person, it is not possible to foresee what he/she will do,” and “Persons with the same problems as X are as able to work as other people”); and d) biopsychosocial causes of schizophrenia, comprising seven items on origin and causes, both previous and current, contributing to schizophrenia in their relatives with mental illness (e.g. “If X had had a very successful life, he/she would not have suffered from this mental disorder,” and “There is much evidence that family behaviours may be the cause of schizophrenia”). Cronbach's alpha coefficients for the subscales ranged from 0.56 (a) to 0.66 (d), and intra-rater reliability ranged from 0.36 to 0.84. Factor analysis performed on the four subscales identified two factors (total percentage of explained variance of 46% (factor 1) plus 27% (factor 2) equals 73%). The first factor included variables concerning social distance (0.80) and social restriction (0.85), in addition to a low importance given by the relatives to information on schizophrenia, its treatments and their utility (− 0.68). The second factor

(0.96) included items concerning relatives' opinions on biopsychosocial origin and causes of schizophrenia in their relatives. 2.2. Adaptation of the instrument for use in the validation study Adaptation of the instrument for use in the German validation study comprised several steps: a) translation and back-translation of the original 35 Italian statements (including the seven categorical items on assumed causes of the disorder, on provided mental health care, and on the given diagnosis); within this process the term “schizophrenia” was replaced by “mental disorder"; b) inclusion of all original items in the first German QOF version in order to replicate the subscale and factor structure of the Italian instrument; however, the original item (no. 22) “X's illness is God's punishment for his bad deeds,” also not included in the Italian factor solution, was removed from the questionnaire for two reasons: first, this item was the only one considered by the Italian relatives (Magliano et al., 1999a) as not very important or appropriate (mean 5.7 (±3.5)) among their ratings of importance and appropriateness of all items using a 10-point-scale (e.g., in contrast to a mean score of 8.3 (±1.7) for items concerning information on treatments and their utility); secondly, it might be viewed as inappropriate in a cultural context with different religious beliefs (see Section 4); c) conversion from the original 3-point-scale to a 5-point Likert scale (5 = ‘completely true,’ 4 = ‘probably true,’ 3 = ‘partially true,’ 2 = ‘probably not true,’ 1 = ‘not true’; in addition, an option of ‘I don't know’ is provided for each item) for 27 items in order to fulfil the statistical requirements of factor analysis. This re-configuration is justified by an extensive discussion in the standard article by Rohrmann (1978), and evidence from empirical studies indicating the 5-point-scale as the optimal range to subjectively experience the distance between the steps as equal, thus attaining the level of interval scales. 2.3. Methods and statistical procedures used for the validation study Characteristics of the groups of relatives as well as socio-demographic and illness-related data of the groups of patients were analysed using the Kruskal–Wallis test. To assess comparability with the Italian QOF version, a multiple-step procedure was defined (Bortz and Döring, 2002; Mummendey, 1995). Step 1: Calculation of the internal consistencies of the four subscales as identified in the original Italian version.

T.W. Kallert, I. Nitsche / Psychiatry Research 158 (2008) 344–355

Calculating Cronbach's alpha coefficients required a reversal of the polarity of answers of five statements (items no. 6, 8, 11, 31, and 32 of the Italian version). Step 2: If the results of the first step should prove comparability, factor analysis (orthogonal (varimax) rotation; eigenvalue N 1 (Kaiser–Guttman-criterion)) would be performed on the four original subscales in order to evaluate construct validity. Step 3: If the results of the first step should not prove comparability, then a) the items would be re-analysed and b) a new subscale or factor structure of the instrument would be calculated. The method for re-analysis of these items includes a frequency analysis of the ‘I don't know’ answers, and the calculation of the item-specific difficulty-index (pi). This index (Borg and Staufenbiel, 1997) represents the ratio of the item-specific empirical result of point ratings in the German group of relatives and of the item-specific maximum rating that could be provided according to the definition in the instrument (a value of ‘5’ for each item in the German version). This means that items with a high rate of ‘completely true’ responses have a high difficulty index. Because the potential to differentiate information is low if all persons agree or disagree with an individual statement, only items characterized by a middle degree of difficulty (i.e. pi N 0.20 and b0.80) are considered appropriate in a questionnaire (Borg and Staufenbiel, 1997; Mummendey, 1995). Relationships between newly identified factors are represented by a Pearson's product-moment correlation (r). This was also calculated to show the relationship between these factors and the categories of causal attributions (not included in the new factor solution) which were analysed descriptively. The statistics program, SPSS for Windows, Version 11.0 was used for all analyses. All tests were two-tailed; the respective levels of significance are given for each result. 2.4. Samples As approved by the ethics committee of the Medical Faculty Carl Gustav Carus Dresden, patients (N = 144) with schizophrenic, recurrent depressive and bipolar disorders and their relatives (N = 161) were recruited (refusal rate in both samples 14.2%); each provided written informed consent. Three of the four psychiatric hospitals in the city of Dresden (pop. 460,000) in East Germany participated in the recruitment process. Rather than creating diagnostic groups comparable in their most important socio-demographic and illness-related features, this sampling process was designed to recruit a casual sample from clinical reality. Therefore, on

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defined weekdays from February through July 2003, researchers contacted all potentially relevant patients within the age range from 18 to 65 years being treated in the inpatient facilities (52.7% of the group of patients), day hospitals (9.3%) and out-patient departments (38.0%) of these hospitals. Researchers asked for consent to provide written materials about this phase of the project to relatives/closest reference persons identified by the patients (note: patients with co-morbid neurological and severe medical disorders that would have required specific somatic inpatient treatment were excluded). In most cases, the questionnaire was completed during personal interviews with the relatives at their homes or while the relatives visited the patient in the hospital; only 21.3% of the relatives asked to complete the questionnaire by themselves and return it via post. Table 1 shows the most important socio-demographic characteristics of the relatives/closest reference persons, sub-divided into three categories according to the main clinical ICD-10 discharge diagnosis as established during the last hospitalization of the assessed patients. Relatives in this study are more frequently older than 55 years of age (mean age 52.4 (± 14.6) years), and twothirds are spouses or parents. On average they have supported the patient for 10 years, but this time period varies significantly, ranging from 4 months to 41 years. A comparison of the characteristics of the relatives across the three patient groups demonstrates two significant differences: a) relatives of patients with schizophrenic disorders have achieved a higher level of professional training than relatives of patients with bipolar disorders, and b) relatives of patients with schizophrenic disorders are most frequently their parents, whereas spouses are most frequently the closest reference persons of patients with recurrent depressive or bipolar disorders. Table 2 shows the most important socio-demographic characteristics of the patients, sub-divided into the three main diagnostic ICD-10 categories. To sum up the main characteristics, this group's age range is similar to that of the relatives (mean age 48.9 (±14.2) years), average number of years since the onset of their illness is approximately 14 years (range: 4 months–52 years), and they have been hospitalised an average of four times. Comparing the characteristics across the three diagnostic groups demonstrates several differences consistent with the varying courses of these disorders: patients with schizophrenic disorders had been hospitalised more frequently than patients with recurrent depressive disorders, and are more frequently unmarried than patients in the other subgroups. Patients with recurrent

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Table 1 Selected socio-demographic features (in percent) of the relatives/key persons (N = 161; sub-divided according to the main diagnostic ICD-10 categories of the patients)

Gender Female Male Age b25 years 26–40 years 41–54 years N55 years Marital status Married Divorced Widowed Single School education 8 classes completed 10 classes completed University entrance qualification None/other Professional training a No apprenticeship completed Skilled worker Graduated from higher education institution Graduated from university Key relative person of the patient No Yes Reference person of the patient Parent Spouse Partner Sibling Child Other (neighbour, legally appointed care person etc.) a

χ2value

Schizophrenic disorder (N = 42)

Recurrent depressive disorder (N = 86)

Bipolar disorder (N = 33)

64.3 35.7

48.8 51.2

54.5 45.5

2.72

0.26

– 7.1 40.5 52.4

3.5 24.4 27.9 44.2

15.1 15.1 27.3 42.4

2.98

0.05

73.8 11.9 9.5 4.8

79.1 5.8 2.3 12.8

81.8 6.1 – 12.1

8.96

0.18

14.3 33.3 50.0 2.4

20.9 43.0 33.7 2.3

24.2 42.4 33.3 –

3.54

0.17

4.8 35.7 35.7 45.2

10.5 52.3 30.2 23.3

12.1 48.5 18.2 24.2

6.56

0.04

14.3 85.7

10.5 89.5

6.1 93.9

1.32

0.51

59.5 7.1 2.4 7.1 14.3 9.5

11.6 57.0 8.1 3.5 8.1 11.6

9.1 60.6 9.1 3.0 15.1 3.0

51.31

0.00

Pvalue

Multiple information possible.

depressive disorders have the highest rate of co-morbid somatic or mental disorders. 3. Results 3.1. Comparison with the original Italian QOF version Table 3 presents the results of recalculating the internal consistencies of the four subscales identified in the original Italian instrument. Most of the subscales established in the Italian study could not be replicated. Only the subscale “social distance” shows a sufficiently comparable result. Limiting the answers analyzed to those of only relatives of German patients with schizophrenic disorders does not improve results in reference to the originally established subscales. In contrast, the negative

values of internal consistencies in this subgroup analysis provide evidence that not only the composition of items in the subscales varies, but that their polarity also differs when compared with the Italian version. Having established these results, we concluded that the original QOF subscales and factors cannot be transferred to a group of relatives of patients with a high percentage of affective disorders, nor to a German group of relatives of patients with schizophrenic disorders. Therefore, a German version of the QOF was defined using the methodology described as Step 3 in Section 2. 3.2. Development of a German version of the instrument For the following four items (original nos. 32, 33, 34, and 21), the percentage of relatives choosing the response,

T.W. Kallert, I. Nitsche / Psychiatry Research 158 (2008) 344–355 Table 2 Selected socio-demographic and illness-related features (in percent) of the patients (N = 144; sub-divided according to the three main diagnostic ICD-10 categories) Schizophrenic Recurrent Bipolar χ2Pdisorder depressive disorder value value (N = 35) disorder (N = 32) (N = 77) Gender Female Male Age b25 years 26–40 years 41–54 years N55 years Marital status Married Divorced Widowed Single No. of previous inpatient treatment episodes a 0–1 2–3 4–5 N5 Current treatment setting Out-patient Inpatient: open ward Inpatient: closed ward Co-morbid disorders None Mental disorder(s) Somatic disorder(s) Mental and somatic disorder(s) a

45.7 54.3

67.5 32.5

53.1 46.9

5.33 0.07

11.4 31.4 34.3 22.9

5.2 23.4 23.4 48.0

9.4 15.6 37.5 37.5

2.28 0.11

17.1 20.0 5.7 57.1

76.6 2.6 6.5 14.3

68.7 18.8 3.1 9.4

48.57 0.00

22.9 28.6 14.3 28.6

26.0 46.7 14.3 11.7

12.5 40.6 25.0 21.9

3.88 0.02

48.6 25.7

32.5 58.4

43.7 28.1

16.61 0.00

25.7

9.1

28.1

31.4 25.7

6.5 24.7

21.9 9.4

22.9

29.9

31.2

20.0

38.9

37.5

14.97 0.02

to provide sufficient differentiation: ‘Opportunity for X's relatives to be informed by psychiatrists on patient's disorder': pi = 0.96; ‘Opportunity for X to be informed by psychiatrists on his/her disorder': pi = 0.95; ‘Opportunity for X to be informed by psychiatrists on drugs and their side effects': pi = 0.95; ‘More money should be devoted to mental health care of patients with this mental disorder': pi = 0.92; ‘The law should allow a person to divorce as soon as possible if the spouse suffers from the same mental disorder as X': pi = 0.15; ‘People with the same problems as X should not vote': pi = 0.06. To calculate a factor analysis, the seven categorical items on assumed causes of the disorder, on provided mental health care, and on the given diagnosis, as well as the six items above with an excessively high or low item-specific difficulty index were excluded. Furthermore, the question on the prevalence of the mental disorder was removed, not only because of the percentage of ‘I don't know’ answers, but also because, as a categorization of assumed frequencies, the defined format of answers differed from all other items. In order to produce a solution similar to the Italian version, the initial calculation was restricted to four factors. As the fourth factor included only two items, the calculation was further adjusted to a three-factor solution, accounting for 40.7% of the total variance, as presented in Table 4. This result was insufficient, however, because some items reduced the internal consistency of the factors significantly, and therefore two more items (nos. 32 and 33) with a higher rate of ‘I don't know’ responses were removed. In order to improve the interpretation of content, item 25 was shifted from factor 1 to factor 2, and item 8 was moved from factor 3 to factor 2. Table 4

Table 3 Internal consistency (Cronbach's alpha) of the QOF subscales as identified with the Italian version of the instrument Subscales

Information for three patients is missing.

‘I don't know’ was higher than 10%: ‘Prevalence of this mental disorder in general population': 26%; ‘Street drugs are the cause of this mental disorder': 15%; ‘There is scientific evidence that family behaviours may be the cause of this mental disorder': 12%; 'A woman who previously suffered from this mental disorder and has recovered could work as baby-sitter': 12%. For six items (original nos. 15, 13, 14, 16, 20, and 30), the result of the item-specific difficulty index (pi) was too high or too low

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Treatments a Social restrictions b Social distance c Biopsychosocial origins d a b c d

Italian study

German study

Relatives of patients with schizophrenic disorders

Relatives of patients with 3 different mental disorders

Relatives of patients with schizophrenic disorders

0.56 0.63 0.60 0.66

− 0.42 0.32 0.66 − 0.21

− 0.47 − 0.21 0.52 − 0.41

Original item no.: 6, 8, 10, 13, 14, 15. Original item no.: 12, 18, 19, 20, 21, 24, 30, 35. Original item no.: 23, 25, 27, 28, 29, 31. Original item no.: 1, 2, 11, 26, 32, 33, 34.

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Table 4 Factorial structure of the German QOF version Factor

Description of the factor

Content of items

— X is an unpredictable person, it is not possible to foresee what he/she will do — Patients with the same problems as X should be sent to a state mental hospital — X's situation affects only us — People with the same mental health problems as X should not get married — People with the same mental health problems as X should not have children — People act aloof towards X — There is little to be done for X; the only way to help is for X to live in a quiet environment Orientation towards — Opinions on X's possibility to recover normality and social — Persons with the same problems as X are as able to integration work as other people — It is easy to notice that X suffers from this mental disorder — A woman who previously suffered from this mental disorder and has recovered could work as baby-sitter — Mental illness is not different from physical illness — Utility of other current non-pharmacological interventions — Utility of currently used drugs Orientation towards — If professionals were better trained, a lot of patients optimising resources for with this mental disorder would not need hospital treatment of mental disorders treatment or they would recover — Psychiatric hospitals are more similar to prisons than to hospitals — If X should attack somebody or behave badly, he/she should be punished as other people, so that he/she will not show this behaviour again — If X had had a very successful life, he/she would not have suffered from this mental disorder — Opportunity for X to be informed by psychiatrists on his/her mental disorder Opportunity for X to be informed by psychiatrists on drugs and their side effects — Opportunity for X's relatives to be informed by psychiatrists on the patient's mental disorder — More money should be devoted to mental health care of patients with this mental disorder — The law should allow a person to divorce as soon as possible if the spouse suffers from the same mental disorder as X — People with the same mental health problems as X should not vote — Prevalence of this mental disorder in general population — Street drugs are the cause of this mental disorder — There is scientific evidence that family behaviours may be the cause of this mental disorder

Factor 01 a Orientation towards Cronbach's pathology and social alpha = 0.75 distance

Factor 02 a Cronbach's alpha = 0.57

Factor 03 a Cronbach's alpha = 0.45

Items not included in the three factors

a

Percentage of explained variance: Factor 01 = 22.8%; Factor 02 = 10.2%; Factor 03 = 7.7%.

No. in the Corrected Cronbach's original Italian item-total alpha if item list of items correlation deleted Item 27

0.47

0.72

Item 35

0.47

0.72

Item 29 Item 12

0.42 0.59

0.73 0.69

Item 24

0.55

0.70

Item 28 Item 23

0.47 0.31

0.72 0.75

Item 06 Item 31

0.42 0.35

0.43 0.45

Item 25

0.35

0.45

Item 21

0.12

0.55

Item 11 Item 10

0.07 0.36

0.58 0.46

Item 08 Item 17

0.30 0.43

0.49 0.18

Item 18

0.25

0.39

Item 19

0.23

0.41

Item 26

0.13

0.50

Item 13 Item 14 Item 15 Item 16 Item 20

Item 30 Item 32 Item 33 Item 34

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presents all details of the resulting factor structure of the German QOF version. The items in factor 1 represent a rather pessimistic pathology-oriented attitude towards mental disorders that can be characterized by social distance and a tendency toward resignation concerning the relatives' opportunities to influence (the course of) the mental disorder. In contrast, the items summarized in factor 2 demonstrate an orientation towards normality. Mental disorders are viewed as not different from other disorders that need active coping strategies and that can be integrated into normal life. Factor 3 combines items that focus – in a broad sense – on basic conditions as well as on optimising resources which might be viewed as important for the improvement of the symptomatology as well as of the treatment of the disorder. Consistent with expectations, factor 1 shows a significant negative correlation with factor 2 (r = −0.480, P = 0.000), but no inter-correlation with factor 3. Table 5 shows the distribution of causal attributions across the three groups of relatives (according to the categories defined in the original item no. 2 of the Italian QOF version), and the correlations of these categories

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with the three factors of the German QOF version. In all groups of relatives, attributions were dominated by psychological problems associated to a large extent with life circumstances, and by a genetic cause. Other factors such as somatic disorders, alcohol or drugs played a minor role. No clear differential pattern appeared among disorder-specific attributions. Only three categories of causal attributions showed statistically significant correlations with the three factors of the German QOF version. “Severe anxiety/psychotrauma” and “stress/ burden associated with unexpected/critical life events” were negatively correlated with the factor on “orientation towards pathology and social distance.” This last category of causal attributions was also positively correlated with the factor on “orientation towards normality and social integration.” The category “bad friendships” was negatively correlated with the factor on “orientation towards optimising resources for treatment of mental disorders.” 4. Discussion To assess the Italian version of the Questionnaire on the Opinions of the Family (QOF), the methodological

Table 5 Distribution of causal attributions as provided in the assessed groups of relatives, and correlations of the attributional categories with the three factors of the German QOF version Causal attributions a

Relatives of patients with schizophrenic disorders (N = 42)

Relatives of patients with recurrent depressive disorders (N = 86)

Relatives of All Factor 01 patients with relatives Orientation bipolar (N = 161) towards disorders pathology (N = 33) and social distance

r Stress/high burden associated with unexpected/ critical life events (e.g. divorce, grief) Severe anxiety/psychotrauma Hereditary Emotional disappointment Family problems Somatic disorder Wrong pharmacological or psychological treatment Bad friendships Pregnancy or childhood illnesses Alcohol Street drugs Magic/witchery Other causes Total a

Multiple answers possible.

P

− 0.18 0.02

22

56

23

101

13 11 14 4 5 5

43 28 17 20 14 10

9 19 8 8 5 1

65 58 39 32 24 15

− 0.17 0.07 − 0.05 0.02 − 0.08 − 0.06

6 1 2 5 2 7 96

3 8 3 0 1 16 219

2 0 3 0 0 10 88

11 9 8 5 3 33 403

0.06 0.05 0.10 0.13 0.01

0.03 0.40 0.53 0.76 0.33 0.44

Factor 02

Factor 03

Orientation towards normality and social integration

Orientation towards optimising resources for treatment of mental disorders

r

r

P 0.20 0.01

0.08 − 0.06 0.03 − 0.04 − 0.05 − 0.13

P 0.10 0.23

0.34 0.08 0.30 0.44 − 0.08 0.30 0.73 0.05 0.53 0.63 0.09 0.26 0.57 0.01 0.95 0.10 0.09 0.28

0.48 0.04 0.61 0.52 0.04 0.63 0.20 − 0.07 0.39 0.11 − 0.08 0.31 0.93 − 0.03 0.68

− 0.17 0.07 − 0.08 − 0.00 − 0.02

0.03 0.40 0.29 0.99 0.80

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approach of this validation study adhered strictly to the definitions in the classical theory of constructing survey questionnaires (Bortz and Döring, 2002; Mummendey, 1995). In particular, to facilitate further validation studies of this instrument, this work describes the methods used to establish the German version in more detail than in the original Italian project. Calculating the degree of factorial similarity (Bortz and Döring, 2002) could have advanced our approach significantly but would have required an additional re-analysis of the original Italian database not defined in the study protocol. Another limitation of this validation study is the chosen sampling procedure to recruit a casual group of relatives from facilities in one geographic area currently caring for patients treated in outpatient and inpatient settings. This is due to the main objectives of this larger German research project on relatives' psychosocial burden and attitudes towards disorders (Kallert, 2002). For the initial sub-study the protocol also required assessment of transferability of the QOF to affective disorders in order to decide on its utility for the project's core part. This core part aims to assess influencing and predicting factors of relatives' burden of care experienced when patients with different chronic mental (affective and schizophrenic) disorders live in the community. Therefore, the patients' sample of this sub-study also included two sub-groups suffering from recurrent depressive and bipolar disorders. Furthermore, the patient's clinical course and current symptomatological condition were not assessed in detail. Thus, we cannot exclude that results on the QOF might be influenced by illness status and severity of patients' disorders. Against this background, at least three reasons for disparity between the Italian and German versions of the QOF emerge. First, among the patients with schizophrenic disorders, considerable differences exist between the groups of relatives and patients assessed in the two studies. Italian relatives are more frequently parents (74% vs. 59.5% in the German sample), have a lower educational level (7% vs. 45.2% in the German sample graduated from university) and only slightly more than half of them lived in a large urban area (57.5% vs. 100% in the German sample). Among the patients with schizophrenic disorders in the Italian group, only 29% are female (vs. 45.7% in the German group), the Italian patients are younger (mean age of 33 years), the duration of the disorder is approximately 4 years shorter than in the German group, and they are more often currently treated as out-patients (68% vs. 48.6%). Second, the Italian version includes several items that have been removed from the German version because their difficulty index indicating the potential to differ-

entiate information is too high or too low. On the one hand, items referring to the opportunity of patients and relatives to be informed about the mental disorder and its treatment uniformly received a very high degree of approval in the German sample of relatives. On the other hand, German relatives strongly and unanimously rejected two statements that address severe restrictions of basic civil rights of patients. These include assumptions of loss of competency in the social roles of partner and citizenship that are more frequent in schizophrenic (Möller and Deister, 2000) than in affective disorders or are more closely connected to the German public opinion and stigma associated with schizophrenic disorders (Gaebel et al., 2002). In both samples it seems to be considered indisputable that mental health care needs more money; thus, this statement was removed from the Italian and German factor solution as well. A statement on training of professionals in order to avoid hospital treatment or increase chances of recovery is included in the German, but not in the Italian version, however. It could be speculated that this might be more appropriate for an East German region that is undergoing enormous changes in its mental health service system since the country's political reunification (Kallert et al., 2004), but is still far from a well-equipped community-oriented system as established in Italy (de Girolamo and Cozza, 2000). Third, three culture-specific issues in which the geographical areas of the studies show considerable differences need to be addressed. The hypothesis would be that these differences might be reflected in the factorial structure of the QOF or in the causal attributions of relatives about mental disorders. Because data for the Italian sample are unavailable, for the German study we can only state that statistically significant relationships between causal attributions and the three QOF factors refer only to a few attributional categories, thus indicating the complex interlinkage of these two constructs. The first culturespecific issue is religious beliefs about causes of illness when comparing samples from Roman Catholic Italian regions (96% of the population) and from a Protestant (23.5% of the population) or atheistic (72.2% of the population) Eastern German state that has been strongly influenced by its history as a formerly socialist country. Surprisingly, however, and contrary to results from studies on Latino-Americans (Weisman et al., 2003), the Italian QOF version did not include an item on religious beliefs, because relatives themselves considered this not very important or appropriate. The German sample of relatives did not show any religious items in the spectrum of their causal attributions.

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The second culture-specific issue is traditional family bonds. While East Germany is currently characterized by high rates of single-person households (35.7% of all households) and divorce (19.2 per 10,000 inhabitants in 2001) (Statistisches Landesamt des Freistaats Sachsen, 2002), comparable statistics in the Italian regions are considerably lower (24% of all households, and 7.0 per 10,000 inhabitants in 2001) (European Data Service, 2005; National Agency for Enterprise and Housing Denmark, 2004). In addition, the rate of parents of patients with schizophrenic disorders is higher in the Italian sample of relatives. In contrast with the Italian QOF version which included the item, “There is much scientific evidence that family behaviours may be the cause of this mental disorder,” 12% of the German sample of relatives responded ‘I don't know’ to this statement. This was not only excluded from the German QOF factorial solution, but also showed no statistically significant correlation with the three factors of this solution. Only 8% of all causal attributions provided by the German sample referred to family problems. The third issue is drug abuse. Recent European data show that, for example, the rate of cannabis use among persons aged 15–34 years within the last 12 months (European Monitoring Centre for Drugs and Drug Addiction, 2003) is lower in Italy (9.4%) than in Germany (13%). Furthermore, the behaviour of young Italians is expected to be scrutinized by older men and women in their clan; they often continue to live at home (Berthoud and Iacovou, 2004) under this strong parental control until they marry (age by which 50% of young people have left home in 2001 (Italy vs. Germany): for men: 29.7 vs. 24.8 years; for women: 27.1 vs. 21.6 years). In view of this specific cultural context and lower prevalence of drug use, the Italian QOF version included the item “Street drugs are the cause of mental disorders.” However, 15% of the German sample of relatives responded ‘I don't know’ to this statement which was subsequently excluded from the German QOF factorial solution. Only 2.5% of all causal attributions provided by the German sample referred to drug abuse. Even when restricted to relatives of patients with schizophrenic disorders, these identified differences in the Italian and German QOF versions preclude reconfirmation of Magliano et al.'s (1999a) suggestions for use of the instrument, particularly for cross-cultural comparisons. The evidence would appear to limit the applicability of the instrument, in its current state of development, to provide valid results about specific ideas and beliefs, including reliable information needed to individualize family education pro-

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grams (Barrowclough et al., 1987), or data necessary to monitor the impact of psychoeducational family interventions (Wiedemann et al., 2003). With the current state of research, differentiating opinions of relatives on chronic schizophrenic and affective disorders into three parts (orientation towards pathology, towards normality, and towards optimising resources for treatment) seems to achieve high facevalidity. These opinions combine frequent public attitudes towards damaged social competences and restrictions of people with mental disorders (Althaus et al., 2002; Gaebel et al., 2002), but also elements of therapeutic realism, desired equality between somatic and mental disorders and needed improvements of mental health care (Möller and Deister, 2000), supporting this conclusion about validity. Nonetheless, further exploration of this instrument will focus on re-assessing the factor structure presented in this article. The German research project on relatives' psychosocial burden, mentioned above, will include this component as a primary objective and will use the final 18-item German version of the QOF, among other instruments. Studying another independent sample of 150 relatives of patients in the three diagnostic categories will provide the opportunity to further validate the German version of the QOF instrument. Although ongoing, the research outlined in this article already points to some issues of concern for future studies in this area. First, research concerning opinions of relatives about causes and social consequences of mental disorders should account for and report in detail the differing characteristics of the relatives studied. Second, further development of questionnaires should focus on disorder-specific opinions of relatives. Finally, more cross-national validation studies on such questionnaires are needed if available instruments are to reach a level of differentiation adequate to discern the heterogeneity of sociodemographic characteristics and attitudes of relatives of people with mental disorders (Jungbauer et al., 2001; Magliano et al., 1999b, 2003). Acknowledgements The study, “Psychosocial burden and attitudes to disorders of relatives of chronically mentally ill persons — A comparison between schizophrenic and affective disorders especially taking into account socially-disintegrating courses of the disorders and direct costs of community treatment,” is supported by a grant (KA 1544/2-1 and 2-2) from the German Research Association (DFG).

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We thank our colleagues in the three participating psychiatric hospitals (University Hospital of the Dresden University of Technology, St. Mary's Hospital Dresden-Klotzsche, Hospital Dresden-Neustadt) for their excellent cooperation. We gratefully acknowledge the assistance in translation by Charlene Reiss, and the most valuable comments of two anonymous reviewers. References Althaus, D., Stefanek, J., Hasford, J., Hegerl, U., 2002. Knowledge and attitudes of the general population towards symptoms, causes, and treatment of depressive disorders (in German) Nervenarzt 73, 659–664. Baronet, A.M., 1999. Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clinical Psychology Review 19, 819–841. Barrowclough, C., Hooley, J.M., 2003. Attributions and expressed emotion: a review. Clinical Psychology Review 23, 849–880. Barrowclough, C., Tarrier, N., Watts, S., Vaughn, C., Bamrah, J.S., Freeman, H.I., 1987. Assessing the functional value of relatives' knowledge about schizophrenia: a preliminary report. British Journal of Psychiatry 151, 1–8. Bertrando, P., Beltz, J., Bressi, C., Clerici, M., Farma, T., Inverizzi, G., Cazzullo, C.L., 1992. Expressed emotion and schizophrenia in Italy: a study of an urban population. British Journal of Psychiatry 161, 223–229. Berthoud, R., Iacovou, M., 2004. Diverse Europe: mapping patterns of social change across the EU. Institute for Social and Economic Research. University of Essex. Borg, I., Staufenbiel, T., 1997. Theorien und Methoden der Skalierung: eine Einführung. 3., überarbeitete Auflage. Huber, Bern. Bortz, J., Döring, N., 2002. Forschungsmethoden und Evaluation für Human-und Sozialwissenschaftler. 3., überarbeitete Auflage. Springer, Heidelberg. Budd, R.J., Oles, G., Hughes, I.C.T., 1998. The relationship between coping style and burden in the carers of relatives with schizophrenia. Acta Psychiatrica Scandinavica 98, 304–309. Butzlaff, R.L., Hooley, J.M., 1998. Expressed emotion and psychiatric relapse: a meta-analysis. Archives of General Psychiatry 55, 547–552. de Girolamo, G., Cozza, M., 2000. The Italian psychiatric reform. A 20-year perspective. International Journal of Law and Psychiatry 23, 197–214. European Data Service, 2005. Statistical Yearbook 2004. Federal Statistical Office, Germany. European Monitoring Centre for Drugs and Drug Addiction, 2003. Annual Report 2003: The State of the Drugs Problem in the European Union and Norway. Lisbon. Gaebel, W., Baumann, A., Witte, M., 2002. Public attitudes towards people with schizophrenia in six large German cities (in German) Nervenarzt 73, 665–670. Guarnaccia, P.J., Parra, P., Deschamps, A., Milstein, G., Argiles, N., 1992. Si Dios quiere: Hispanic families' experiences of caring for a seriously mentally ill family member. Culture, Medicine and Psychiatry 16, 187–215. Ivanović, M., Vuletić, Z., Bebbington, P., 1994. Expressed emotion in the families and of patients with schizophrenia and its influence on the course of illness. Social Psychiatry and Psychiatric Epidemiology 29, 61–65.

Jenkins, J.H., Karno, M., 1992. The meaning of expressed emotion: theoretical issues raised by cross-cultural research. American Journal of Psychiatry 149, 9–21. Jungbauer, J., Bischkopf, J., Angermeyer, M.C., 2001. Burdens on relatives of patients with psychiatric disorders — development, concepts and results of research (in German) Psychiatrische Praxis 28, 105–114. Kallert, T.W., 2002. Psychosocial burden and attitudes to disorders of relatives of chronically mentally ill persons — a comparison between schizophrenic and affective disorders especially taking into account socially disintegrating courses of the disorders and direct costs of community treatment. Research project funded by the German Research Association. http://www.dfg.de/gepris. Kallert, T.W., Leisse, M., Winiecki, P., 2004. Needs for care of chronic schizophrenic patients in long-term community treatment. Social Psychiatry and Psychiatric Epidemiology 39, 386–396. López, S.R., Polo, A.J., Karno, M., Hipke, K.H., Jenkins, J.H., Vaughn, C., Snyder, K.S., 2004. Ethnicity, expressed emotion, attributions, and course of schizophrenia: family warmth matters. Journal of Abnormal Psychology 113, 428–439. Magliano, L., Marasco, C., Guarneri, M., Malangone, C., Lacrimini, G., Zanus, P., Maj, M., 1999a. A new questionnaire assessing the opinions of the relatives of patients with schizophrenia on the causes and social consequences of the disorder: reliability and validity. European Psychiatry 14, 71–75. Magliano, L., Fadden, G., Fiorillo, A., Malangone, C., Sorrentino, D., Robinson, A., Maj, M., 1999b. Family burden and coping strategies in schizophrenia: are key relatives really different to other relatives? Acta Psychiatrica Scandinavica 99, 10–15. Magliano, L., Fadden, G., Economou, M., Held, T., Xavier, M., Guarneri, M., Malangone, C., Marasco, C., Maj, M., 2000. Family burden and coping strategies in schizophrenia: 1-year follow-up data from the Biomed I study. Social Psychiatry and Psychiatric Epidemiology 35, 109–115. Magliano, L., Fiorillo, A., Malangone, C., Marasco, C., Guarneri, M., Maj, M., 2003. The effect of social network on burden and pessimism in relatives of patients with schizophrenia. American Journal of Orthopsychiatry 73, 302–309. Mannion, E., Mueser, K., Solomon, P., 1994. Designing psychoeducational services for spouses of persons with serious mental illness. Community Mental Health Journal 30, 177–189. Möller, H.J., Deister, A., 2000. Schizophrenie. In: Möller, H.J., Laux, G., Kapfhammer, H.J. (Eds.), Psychiatrie und Psychotherapie. Springer, Berlin, pp. 997–1068. Mummendey, H.D., 1995. Die Fragebogen-Methode. Grundlagen und Anwendung in Persönlichkeits-, Einstellungs-und Selbstkonzeptforschung. 2., korrigierte Auflage. Hogrefe, Göttingen. National Agency for Enterprise and Housing Denmark, 2004. Housing Statistics in the EU, 2003. Ohaeri, J.U., Fido, A.A., 2001. The opinion of caregivers on aspects of schizophrenia and major affective disorders in a Nigerian setting. Social Psychiatry and Psychiatric Epidemiology 36, 493–499. Rohrmann, B., 1978. Empirische Studien zur Entwicklung von Antwortskalen für die sozialwissenschaftliche Forschung. Zeitschrift für Sozialpsychologie 9, 222–245. Schützwohl, M., Koch, R., Priebe, S., Kiejna, A., Hadryś, T., Nawka, P., Reguliová, H., Raboch, J., Kališová, L., Kallert, T.W., and the EDEN-Study Group submitted for publication. Day-hospital care vs. inpatient care for acute mentally ill. Comparing effectiveness concerning burden on relatives and relatives' mental health as assessed within a multi-site randomised controlled trial. Social Psychiatry and Psychiatric Epidemiology.

T.W. Kallert, I. Nitsche / Psychiatry Research 158 (2008) 344–355 Statistisches Landesamt des Freistaats Sachsen, 2002. Statistisches Jahrbuch Sachsen 2002. Kamenz. Stolle, R., Stark, F.M., 1994. Schizophrenia: subjective theories of illness. An explorative study. Part 2: relatives (in German) Psychiatrische Praxis 21, 96–100. Stromwall, L.K., Robinson, E.A.R., 1998. When a family member has a schizophrenic disorder: practice issues across the family life cycle. American Journal of Orthopsychiatry 68, 580–589. Weisman, A.G., Gomes, L.G., López, S.R., 2003. Shifting blame away from ill relatives. Latino families' reactions to schizophrenia. The Journal of Nervous and Mental Disease 191, 574–581.

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Wiedemann, G., Rayki, O., Feinstein, E., Hahlweg, K., 2002. The Family Questionnaire: development and validation of a new selfreport scale for assessing expressed emotion. Psychiatry Research 109, 265–279. Wiedemann, H., Klingberg, S., Pitschel-Walz, G., Arbeitsgruppe Psychoedukation, 2003. Psychoeducational interventions in the treatment of patients with schizophrenic disorders (in German) Nervenarzt 74, 789–808.