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A study of the family burden of 150 family members of schizophrenic patients
European Psychiatry 19 (2004) 395–401 http://france.elsevier.com/direct/EURPSY/
Original article
A study of the family burden of 150 family members of schizophrenic patients B. Lowyck a,*, M. De Hert a,*, E. Peeters a, M. Wampers a, P. Gilis b, J. Peuskens a a
Universitair Centrum St. Jozef, Catholic University Louvain, Leuvensesteenweg 517, 3070 Kortenberg, Belgium b Eli Lilly Belgium, Stoofstraat 52, 1000 Brussels, Belgium
Abstract Purpose. – Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. Subjects/methods. – The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatrie. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. Results. – The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Conclusions. – Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. © 2004 Elsevier SAS. All rights reserved. Keywords: Burden; Family members; Schizophrenia
1. Introduction Investigation of family burden (FB) of schizophrenic patients has risen sharply mainly because of the trend towards deinstitutionalisation in psychiatry. A better understanding of FB can contribute towards the establishment of a care system that meets the requirements and needs of family members. The concept “family burden” was defined by Platt [13] as the presence of problems, difficulties or negative events that influence the life of the family member of the psychiatric patient. Although all studies to date agree that family members experience FB, there has been little agreement as to what factors influence the FB [8,9]. For example, the results of studies on the influence of the psychiatric diagnosis [10–12] and the symptom–behaviour of the patient * Corresponding author. E-mail addresses: [email protected] (B. Lowyck), [email protected] (M. De Hert). © 2004 Elsevier SAS. All rights reserved. doi:10.1016/j.eurpsy.2004.04.006
[2–4,14,15] on FB, have shown that FB depends only weakly on the psychiatric diagnosis of the patient and that no clear consensus exists on the effect of the patient’s symptom– behaviour on the FB. Only the quantity of the symptom– behaviour seems to have a clear effect: the more symptoms the patient shows, the greater the FB [15]. No consensus was found on the effect of the duration of the illness on FB [1,3,15]. Neither the length of treatment [5], nor the treatment setting [17] had a significant effect on the FB. No consensus was found on the effect of the kind of family relationship (parent, partner, sibling) between patient and caretaker on the FB [3]. These results demonstrate a poor consensus on the effect of the various variables studied on FB. This lack of consensus is in our opinion due to three factors: first, the fact that FB is often differently defined and operationalised in the different studies; some studies refer only to the objective aspects of FB, others only to the subjective factors, and a third group to both. Second, the timeperiod questioned in the different studies varies from 1 week
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to 6 months. And third, in most studies only one or a few variables are examined, and therefore, other variables than the one studied, may also have had an effect on the FB. In our study we would like to overcome these deficiencies by: (1) including both the objective and subjective aspects of burden in the operationalisation of FB, (2) examining a time period, 4 weeks; that is long enough to obtain a clear and correct view of the FB, and at the same time, not too long, to ensure that family members can remember well what happened and therefore give reliable answers, (3) studying the various factors in one exhaustive study, (4) use a face-to-face, semi-structured interview. Using a semi-structured interview will enable us to obtain the most complete and valid information and is therefore preferred above other instruments in research on FB [13]. 2. Objectives The objective of this study is to acquire more information on the variables that determine both objective and subjective family burden. This goal is twofold: (1) we are interested in quantifying important variables related to the family burden of family members of schizophrenic and schizo-affective patients for the Belgian population and (2) we are interested in acquiring more insight in the variables that generate a vast mount of burden so mental health professionals can take this into account. 3. Subjects and methods 3.1. Subjects Family members were asked to participate in the study when the patient was receiving in- or outpatient treatment at the university psychiatric hospital Saint Joseph (Kortenberg, Belgium) or outpatient treatment at the hospital Saint Alexius (Brussels, Belgium). Also partners and parents who are a member of Similes (a self-help group for family members of psychiatric patients) were asked to participate in our study (Louvain, Antwerp and Malines, Belgium). The patients in this latter group were both in- and outpatients. The patients receiving inpatient treatment stay in the hospital the entire day and were only allowed to go home 1 or 2 days during the weekend. Outpatient treatment on the other hand means that the patient is treated on an ambulatory basis at the outpatient clinic or in private practice. Family members were only included as respondents in the study if the patient had been diagnosed with schizophrenia or a schizo-affective disorder on Axis I of the DSM-III-R by the psychiatrist and was receiving psychiatric treatment at the moment of the interview. Family members of patients with another diagnosis on Axis I of the DSM-III-R were excluded from the study. The family member was always the parent or partner of the patient. They were only included in the study if they were the main caretaker of the patient, i.e. the outpatient lived with
them on a regularly basis, the inpatient stayed at their home during the weekends or if discharged from the hospital, they were involved in the daily care of the patient such as laundry, insurance, medical treatment, etc. All partners and parents who provided care for the patient were included in the study if both themselves and the patient fulfilled the inclusion and exclusion criteria. No judgments were made regarding the physical or mental health of the family member. After the goal of the study was explained, the family members were asked to participate in the study by the psychiatrist who was responsible for the care of the patient (informed consent). When the family member agreed to participate, he/she was contacted by phone by the research psychologist and an appointment was made. One hundred and seventeen family members of patients receiving treatment at the university hospital, 12 family members of patients receiving treatment at the night hospital and 11 family members of Similes agreed to participate in our study. Only 17 family members who were asked to participate in our study refused to do so. 3.2. Methods The interview for family burden (IFB), a semi-structured interview developed by Kluiter et al. [6], was used as an instrument for measuring the FB. Recent analyses by Kramer [7] have shown that the IFB is a reliable and valid instrument. More specifically, a high degree of inter-rater reliability of the separate items (the average weighted kappa was 0.90), a good internal consistency of the different scales (Cronbach’s alpha varies from 0.69 to 0.90) and a good construct and content validity were displayed. The IFB also displays a high sensitivity to change. The IFB examines the socio-demographic data of the patient and the family member, together with the clinical record, current treatment and symptomatic behaviour of the patient. This symptomatic behaviour is divided into three sub-scales; (1) depressive and anxious symptomatic behaviour, (2) disorganised symptomatic behaviour and (3) negative symptomatic behaviour [7]. For a list of 39 symptoms the respondents had to indicate on a four point scale whether in the past 4 weeks they had been confronted with the specific symptomatic behaviour: not at all (=0), now and then, i.e. 1–8 days (=1), quite frequently, i.e. 9–20 days (=2) or frequently, i.e. more than 20 days (=3). Each scale score is obtained by adding together the scores for each of the symptoms of that scale. The minimum and maximum values for the depressive and anxious symptomatic behaviour scale are 0 and 15, for the disorganised symptomatic behaviour scale 0 and 45 and for the negative symptomatic behaviour scale 0 and 24. The IFB measures also the following burden variables (on a four point scale: not at all (=0), now and then, i.e. 1–8 days (=1), quite frequently, i.e. 9–20 days (=2) or frequently, i.e. more than 20 days (=3)): (1) practical/domestic tasks; efforts on behalf of patient, exchanging tasks, extra work; (2) atmo-
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Table 1 Socio-demographic data of the respondent and the patient Respondent Gender Male Female Civil status Unmarried Married Divorced Widow/widower Diploma Only primary school Only secondary school Higher education Professional status Active Unemployed Invalidity Retired
Frequency
Percentage (%)
Patient
Frequency
Percentage (%)
46 104
31 70
Male Female
103 47
69 31
8 105 16 21
5 70 11 14
Unmarried Married Divorced Widow/widower
119 25 5 1
79 17 3 1
26 73 5
17 49 34
only primary school Only secondary school Higher education
12 106 32
8 71 21
66 7 11 62
47 5 7 41
Active Unemployed Invalidity Student Retired
44 8 72 13 10
29 6 50 9 7
sphere in house; tense atmosphere, rows; (3) emotional consequences; emotional burden and the concerns of the respondent for the other family members. The emotional burden scale consists of the sum of the following scales [4]: (1) concerns for the patient and for oneself, (2) the extent of inconvenience and (3) the extent to which one felt burdened; (4) major incidents: inconvenience for family member, break in contact with family/acquaintances; (5) financial contribution of the family for the patient in the past year. Unless indicated otherwise, these burden variables always relate to the 4 weeks preceding the interview. The interview was recorded by two female psychologists trained in recording and scoring the IFB. The average recording time was 105 min. The main statistical methods used in our study are: (1) analysis of variance (ANOVA), to study the effect of the treatment setting, the length of the respective treatment and the relationship between respondent and patient on the different burden variables, and (2) Pearson correlation coefficient, to examine the correlation between the different burden variables and (a) the symptomatic behaviour of the patient, (b) the length of illness and number of admissions, and (c) the age of the respondent. Pearson correlations were used since we can assume that the dependent variables (i.e. the burden variables) studied are situated on an interval-level. 4. Results 4.1. Socio-demographic data of the respondents and patients See also Table 1. Of the 150 respondents who took part in the interview, 69% were women and 31% men. Seventy percentage of the respondents were married or cohabiting, 34% had a higher or university education diploma and 42% were retired at the time of the interview. More family members of male (69%) than female patients (31%) took part in the study.
The average age of the patients was 33 (S.D. = 8.69; range = 51, with minimum = 17 and maximum = 68), most of them had never been married or had never cohabited (79%). At the time of the interview, 79% of them were on disability, 9% were students, 7% were in paid employment and 5% received unemployment benefits. 4.2. Duration of illness and number of admissions The duration of the illness was operationalised as the number of years since the first psychiatric admission. Patients had been ill for an average of 9 years (M = 9.14; S.D. = 6.55; range = 28, with minimum = 0 and maximum = 28) and had been hospitalised on average four times (M = 3.79; S.D. = 3.17; range = 24). 4.3. Current treatment setting At the time of the interview, 69 patients (46%) were receiving outpatient treatment, 64 patients (43%) were hospitalised and 17 patients (11%) were receiving day treatment. The outpatient treatment consisted of a regular visit (weekly/bi-weekly) to the psychiatrist. The patients lived mainly with their family. Patients in the day treatment programme lived mainly in sheltered housing, under the supervision and the guidance of a psychiatric hospital. During the week they came daily to the hospital to attend their treatment programme, and they had a weekly appointment with their psychiatrist. Patients in the inpatient treatment programme, were staying in the hospital and were allowed to visit home (parents, partners) every weekend. The day patient data were analysed together with the hospitalised group since they all lived in sheltered housing during the week. The total number of patients in the outpatient treatment group was 69 and the total number of patients in the hospitalised treatment group was 81. The length of treatment was broken down into less than and more than 1 year in treatment. Of the patients
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receiving outpatient treatment, 40 (27%) had been receiving treatment for more than 1 year and 30 for less than 1 year (20%). As far as the hospitalised patients were concerned, 41 patients had been admitted for less than 1 year (27%) and 39 for more than 1 year (26%). 4.4. Symptomatic behaviour This scale represents the amount of symptoms the family member reported. The average score for the sub-scale (0–45) “disorganised symptomatic behaviour” was 3.5, for the subscale (0–24) “negative symptomatic behaviour” 4.19 and for the sub-scale (0–15) “depressive symptomatic behaviour” 2.13. On average, patients had attempted suicide 0.7 times during their life. 4.5. The burden variables 4.5.1. Practical/domestic tasks Efforts: encourage patient into activity, supervise medication and accompany him/her if he/she has to go anywhere. Respondents had made an average of four (S.D. = 4) efforts in the past 4 weeks. Taking over tasks: The average number of tasks that the patient carried out himself/herself before the onset of the illness or would do himself/herself under normal circumstances and which were taken over by the respondent following the onset of the illness (wholly/in part) was 2.7. For 45% this consisted of making decisions regarding major expenditure and doing the shopping, for 29% of maintaining contacts with family/acquaintances, for 53% of menial work (including washing clothing), for 53% of carrying out repairs or minor chores and for 56% of sorting out affairs with official institutions. Quantity of extra work: over the past 4 weeks, 38% had not had any extra work, 27% had had a little extra work, 17% quite a lot of extra work and 18% a great deal of extra work. 4.5.2. Atmosphere in house Mood: in a little more than half (54%) the families the atmosphere had been good over the past 4 weeks, for 31% slightly tense, for 10% fairly tense and for 5% extremely tense. Rows: for 78% of the respondents there had not been any rows relating to the psychiatric problems of the patient, for 19% occasionally, for 2% quite often and 1% admitted having rows very often. 4.5.3. Major incidents Inconvenience: inconvenience for the actual respondent refers to behaviour by the patient, which results in inconvenience for the respondent such as: use of violence, excessive noise and preventing the respondent from sleeping at night. Eighty percentage of the respondents did not suffer any inconvenience, 19% mild inconvenience and 1% significant inconvenience. Ever left/threatened to leave home: this question relates to the entire period since the first psychiatric admission of the
patient. Seven percentage of respondents said a family member had permanently left home because of the patient’s problems. Twelve percentage said a family member had merely threatened to leave home and 81% said no one had either left or threatened to leave home. Ever broken off contact: for most respondents (69%), contact with friends/family had never been broken off because of the patient’s problems, but 31% said contact with certain friends/acquaintances had lost momentum or had actually been broken off. 4.5.4. Financial contribution The financial contribution relates to the total cost of the family’s expenditure on the patient during the past year. Eleven percentage of respondents had a net monthly family income of between 496 and 744 Q, 27% between 744 and 1239 Q, 23% between 1239 and 1735 Q and 20% between 1735 and 2479 Q. Nineteen percentage had a monthly family income greater than 2479 Q. The average financial contribution during the year prior to the interview was estimated by respondents at 2623 Q, with a minimum of 0 and a maximum of 13 277 Q. 4.5.5. Emotional consequences Emotional burden: the average score on the emotional burden scale is 8.80 (S.D. = 7.42; minimum = 0, maximum = 39). Only an extremely small percentage of respondents (2%) said they had never been burdened emotionally. Concern for other family members due to disturbance caused by the patient: Fifty-two percentage of respondents never worried about the other members of the family, 30% were occasionally worried, 9% quite a lot and a further 9% were continuously worried about their partner and/or other children. 4.6. Identification of variables associated with FB With a 2 (outpatient/admission) × 2 (less than 1 year/more than 1 year in treatment) × 2 (parent/partner) ANOVA, the effect of the treatment setting (outpatient/admission), the length of the respective treatment (less than 1 year/more than 1 year), the relationship between respondent and patient (parent/partner) and possible interaction effects were investigated. For an overview see Table 2. Treatment setting: the results of our study show no significant effects for the treatment setting. Length of treatment: our analyses show that family members of patients who are treated for less than 1 year show significantly more concern for other family members (P < 0.014) than family members of patients treated for more than 1 year. Relationship: a significant effect (P < 0.039) was found for the total number of tasks taken over, whereby parents had taken over significantly more tasks from the patient than partners. The total financial cost for the past year also varied significantly (P < 0.010) for parents and partners; parents had on average spent 3115 Q on the patient, while for partners this
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Table 2 The analysis of variance (ANOVA) of effect of the treatment setting, the length of the respective treatment and the family relationship on the FB Practical Efforts Taking over tasks Quantity of extra work Atmosphere at home Mood Rows Emotional consequences Emotional burden Concern for others Major incidents Inconvenience Severed contact Left/threatened to heave home Financial contribution Total cost
Treatment setting
Length of treatment
Family relationship
Setting and relationship
Length and relationship
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. P < 0.039 n.s.
n.s. P < 0.002 P < 0.001
n.s. n.s. n.s.
n.s. n.s.
n.s. n.s.
P < 0.016 n.s.
n.s. n.s.
n.s. P < 0.033
n.s. n.s.
n.s. P < 0.014
n.s. n.s.
P < 0.040 n.s.
n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s.
n.s.
P < 0.010
n.s.
n.s.
was only 670.5 Q. Finally, the mood at home had also been significantly (<0.016) different for parents and partners, whereby parents had experienced more stress than partners. Interaction effects: a significant interaction effect was found between treatment setting and relationship for the following three variables: (1) the total number of tasks taken over (P < 0.002), whereby parents had taken over more tasks when the patient was being treated as an outpatient and partners had taken over more tasks if the patient was admitted, (2) the amount of extra work (P < 0.001), whereby partners had had more extra work for the patient if he/she was admitted and parents had had more extra work if the patient was being treated as an outpatient, and (3) the emotional burden (P < 0.040). A second significant interaction effect was found between the length of treatment and the relationship (P < 0.033): parents reported more rows if the patient was treated for less
than 1 year, and partners experienced more rows if the patient was treated for more than 1 year. 4.7. Correlations The link between the different burden variables and (1) the symptomatic behaviour of the patient, (2) the length of illness and number of admissions and (3) the age of the respondent and the patient was calculated using Pearson correlations (see Table 3). There is a positive correlation between the total amount of symptomatic behaviour and the different burden variables. The more symptomatic behaviour the family member reported, the more efforts family members had made, the more extra work they had had, the worse the mood had been at home, the more emotionally burdened they had felt, the more often other family members had left home or threatened to do so and the more inconvenience had been experienced.
Table 3 The relationship between burden variables and clinical and demographic variables (Pearson correlations) Load variables Practical Efforts Taking over tasks Quantity of extra work Atmosphere at home Mood Rows Emotional consequences Emotional burden Concern for others Major incidents Inconvenience Severed contact Left/threatened to heave home Financial contribution Total cost *
Total symptom
Length of illness
Number of admissions
Age of respondent
Age of patient
0.596 * 0.182** 0.272 *
0.083 0.144 –0.089
0.074 0.101 0.096
–0.028 0.218* 0.065
–0.054 0.05 –0.127
0.482 * 0.096
–0.076 –0.065
0.045 –0.058
0.048 0.006
–0.155 –0.113
0.557 * 0.137
0.027 –0.092
0.136 0.103
–0.116 0.041
–0.066 –0.082
0.319 * 0.094 0.212**
–0.057 0.045 0.074
–0.006 0.245* –0.04
0.005 –0.112 –0.07
–0.063 –0.02 0.012
–0.139
–0.023
0.094
–0.243*
–0.037
Correlation is significant at the 0.01 level. ** Correlation is significant at the 0.05 level.
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No link was found between the age of the respondent and the various burden variables, except for exchanging tasks (P < 0.01): the older the respondent, the more tasks he/she had taken over from the patient. As far as the age of the patient is concerned, a significant correlation (P < 0.01) was only found with the total financial costs during the past year, which points to the fact that respondents contributed more financially the younger the patient was. There was a positive correlation (P < 0.01) between the number of times the patient was admitted and the contact with family and friends of the respondent that was severed or lost: more contacts were severed or lost the more times the patient had been admitted. 5. Discussion The goal of our study was twofold: to acquire more insight into the amount and extent of FB family members of schizophrenic patients experience and to gain a better understanding of the factors that influence the FB. Although previous studies had examined the influence of the symptom–behaviour of the patient [2–4,14,15], the duration of the illness [1,3,15], the length of treatment [5], the treatment setting [17] and the family relationship (parent, partner, sibling) between patient and caretaker [11] on the FB, no clear findings were obtained. This can, in our opinion, be attributed to certain shortcoming, i.e. the fact that FB was differently defined and operationalised in the different studies; that the time-period questioned in the different studies varied and that in most studies only one or a few variables were examined, and therefore, other variables than the one studied, may also have had an effect on the FB. In this study we have attempted to overcome these shortcomings. The large majority of the respondents in our study were women. This over-representation of female family members in the investigations of family members of schizophrenic patients has already been highlighted by Schene and van Wijngaarden [15]. It can partly be explained by the fact that mothers often still have the responsible role in looking after family members, especially when these members require help [15]. 5.1. The FB Our investigation showed that both parents and partners are closely involved in caring for their psychiatrically ill family member, both on a practical and an emotional level. Family members made considerable efforts for the patient and took over various tasks from him/her, after he/she became ill. Nor was the financial contribution negligible: family members had spent on average 2623 Q on the patient during the year prior to the interview. And this is likely to be an underestimate. Parents often mentioned that they felt inhibited in adding up the expenditure (because they worried that it would seem as if they ‘resented’ the expenses). It is
clear that the money family members spent, concerns a considerable financial burden that needs to be recognised by the clinicians and other professionals involved in the treatment of the patient, as well as by the government and those responsible for the health insurance. The consequences of the psychiatric illness of the patient were also felt by the respondent on an emotional level, and this in the form of a tense atmosphere at home, rows and a loss of contact with certain family members and friends. Only a very small percentage of the respondents (2%) said not having felt emotionally burdened. Although Schene and van Wijngaarden [15] object to expressing and measuring the FB in subjective terms, since according to them, this says more about the personal style of the respondent than about the actual burden, we strongly believe that the emotional burden is a very valuable result variable. It has been shown [7] that this variable, which informs us about how burdened the responsible family member feels, indicates whether the respondent’s “supporting power” has been exceeded or not. We think it is important to check this with the family members, since it can have important consequences for the care of the patient; a family member who feels over-burdened will not be able to provide the necessary and important care. And this care by family members becomes increasingly important, because of the growing trend towards deinstitutionalisation in psychiatry. 5.2. The variables associated with the FB Our results also show that family members of patients who have been treated for less than 1 year worry more about the other members of the family than family members of patients who have been receiving treatment for more than 1 year. This suggests that in the initial phase of treatment the caregiver worries not only about the patient but also about the other members of the family and how they are dealing with the mental illness of the patient. This can therefore create an additional “burden” for the main caregiver. A study by Smith and Birchwood [16] shows that psycho-education can significantly reduce the FB family members experience. We therefore believe it is appropriate for psycho-education sessions to be offered to the whole family, so that all the family members are properly informed about the course and the consequences of the patient her/his illness and can share his/her concerns with professionals and other family members. No other effect of the length of treatment on FB has been found. This is in accordance with the findings of other studies [1,5]. In contrast to what one would expect, family members of patients that were treated in an outpatient setting (and thus living at home) did not experience more FB than family members of the hospitalised patients. This probably means that the emotional and the practical burden family members of patients suffering from schizophrenia experience is high and this regardless whether the patient lives at home or stays in the hospital. Another finding of our study is that parents had taken over more tasks from the patient than partners, that they had
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contributed more financially and that the mood at home had been tenser for parents than for partners. The fact that parents, in contrast to partners, are usually the carers when the illness begins (and the patient is therefore frequently actively psychotic) can probably partly explain this effect. Nevertheless, this last result must be interpreted with the necessary caution, given that the interviewed partners had sometimes suffered from a psychiatric disorder themselves and had therefore not always experienced the disturbance caused by the patient in the same way the parents did. The results of our study did not show any other effects of the family relationship on the FB. Results from other studies confirm this finding [3,17]. A very significant link was found between the amount of symptomatic behaviour on the one hand and the FB on the other. This finding was in line with the results of the studies of Schene and van Wijngaarden [15] and Kramer [7] that showed that the more symptoms of the patient that were reported by the family member, the more FB he/she experienced. No support was found in our study for the results of other investigations that indicated that either positive or disorganised symptoms [3] or negative symptoms [2,4,14] created the greatest burden. The fact that our study did not find any differences in FB between positive and negative symptoms, can possibly be explained by the fact that the symptombehaviour in our study, as well as in the study of Schene and van Wijngaarden [15] and Kramer [7], was measured by asking the family member about the symptoms. One can expect that, when the symptoms are rated by a mental health professional, like in the other studies, a better and more precise differentiation between the symptoms is obtained. Further research, in which not only the respondent, but also the clinician who is treating the patient, independently scores the amount of symptomatic behaviour is therefore needed. This further research needs also to ensure us that the effect found of the quantity of symptom behaviour on FB, is not a result of the fact that family members who say they feel more burdened also report more symptomatic behaviour of the patient. To summarise, we can conclude from the first part of our study that family members taking care of their schizophrenic or schizo-affective partner or child, do experience a vast amount of burden, both on a practical and an emotional level. The second aim of our study was partly obtained. Even when meeting the constraints of former studies, little more insight is gained from this part of the study. The only sound effect found, is that the quantity of the symptoms of the patient strongly influence the FB. This indicates that an adequate treatment of symptoms does not only benefit the patient, but all the persons that are concerned. Finally, we wish to point out that studying the FB only sheds light on one aspect of the relationship between family members and the patient, whereby the term “burden” has a predominantly negative connotation. Although the consequences that an illness such as schizophrenia involves for the family members are extremely far-reaching, various respon-
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dents clearly stated that their relationship did not only consist of “burdensome” experiences. Some respondents pointed out that they often got something out of caring for the patient, such as a much more solid relationship with their family member than before the onset of the illness. Acknowledgements This study was made possible by an educational grant from Eli Lilly and Company. References [1]
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Cornwall PL, Scott J. Burden of care, psychological distress and satisfaction with services in the relatives of acutely mentally disordered adults. Social Psychiatry and Psychiatric Epidemiology 1996; 31:345–8. Fadden G, Bebbington P, Kuipers L. The burden of care: the impact of functional psychiatric illness on the patient’s family. British Journal of Psychiatry 1987;151:285–92. Gibbons JS, Horn SH, Powell JM. Schizophrenic patients and their families. A survey in a psychiatric service based on a DGH unit. British Journal of Psychiatry 1984;144:70–7. Gopinath PS, Chaturvedi SK. Distressing behaviour of schizophrenics at home. Acta Psychiatrica Scandinavia 1992;86:185–8. Herz MI, Endicott J, Spitzer R. Brief versus standard hospitalization: the families. American Journal of Psychiatry 1976;331:795–801. Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatrie. Groningen: Rijksuniversiteit. Kramer J. Familieleden onder druk, de ontwikkeling en psychometrische beoordeling van het interview voor de belasting van de familie. Groningen: Proefschrift. : Rijksuniversiteit; 1998. Lowyck B, Peeters E, De Hert M, Gilis P, Peuskens J. Vooralsnog is het onduidelijk door welke factoren gezinsleden van psychiatrische patiënten belast worden. Een literatuurstudie [Untill now it has been unclear which factors determine the family burden]. Tijdschrift voor Psychiatrie 2000;42:85–93. Lowyck B, De Hert M, Peeters E, Gilis P, Peuskens J. Can we identify the factors influencing the burden on family members of patients with schizophrenia: a study of the literature. International Journal of Psychiatry in Clinical Practice 2001;5:89–96. MacCarthy B, Lesage A, Brewin C. Needs for care among the relatives of long-term users of day care. Psychological Medicine 1989;19: 725–36. Mueser KT, Webb C, Pfeiffer M, et al. Family burden of schizophrenia and bipolar disorder: perceptions of relatives and professionals. Psychiatric Services 1996;47:507–11. Pariante CM, Carpienelllo B. Family burden in relatives of schizophrenics and of people with mental retardation: a comparative study. European Psychiatry 1996;11:381–5. Platt S. Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychological Medicine 1985;15: 383–93. Raj L, Kulhara P, Avasthi A. Social burden of positive and negative schizophrenia. The International Journal of Social Psychiatry 1991; 37:242–50. Schene AH, van Wijngaarden B. Consequenties van psychotische stoornissen voor familieleden [Consequences of psychotic disorders for the family]. Tijdschrift voor Psychiatrie 1994;36:6–19. Smith JV, Birchwood MJ. Specific and non-specific effects of educational intervention with families living with a schizophrenic relative. British Journal of Psychiatry 1987;150:645–52. Winefield HR, Harvey EJ. Needs of family caregivers in chronic schizophrenia. Schizophrenia Bulletin 1994;20:557–66.
Original article
A study of the family burden of 150 family members of schizophrenic patients B. Lowyck a,*, M. De Hert a,*, E. Peeters a, M. Wampers a, P. Gilis b, J. Peuskens a a
Universitair Centrum St. Jozef, Catholic University Louvain, Leuvensesteenweg 517, 3070 Kortenberg, Belgium b Eli Lilly Belgium, Stoofstraat 52, 1000 Brussels, Belgium
Abstract Purpose. – Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. Subjects/methods. – The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatrie. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. Results. – The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Conclusions. – Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. © 2004 Elsevier SAS. All rights reserved. Keywords: Burden; Family members; Schizophrenia
1. Introduction Investigation of family burden (FB) of schizophrenic patients has risen sharply mainly because of the trend towards deinstitutionalisation in psychiatry. A better understanding of FB can contribute towards the establishment of a care system that meets the requirements and needs of family members. The concept “family burden” was defined by Platt [13] as the presence of problems, difficulties or negative events that influence the life of the family member of the psychiatric patient. Although all studies to date agree that family members experience FB, there has been little agreement as to what factors influence the FB [8,9]. For example, the results of studies on the influence of the psychiatric diagnosis [10–12] and the symptom–behaviour of the patient * Corresponding author. E-mail addresses: [email protected] (B. Lowyck), [email protected] (M. De Hert). © 2004 Elsevier SAS. All rights reserved. doi:10.1016/j.eurpsy.2004.04.006
[2–4,14,15] on FB, have shown that FB depends only weakly on the psychiatric diagnosis of the patient and that no clear consensus exists on the effect of the patient’s symptom– behaviour on the FB. Only the quantity of the symptom– behaviour seems to have a clear effect: the more symptoms the patient shows, the greater the FB [15]. No consensus was found on the effect of the duration of the illness on FB [1,3,15]. Neither the length of treatment [5], nor the treatment setting [17] had a significant effect on the FB. No consensus was found on the effect of the kind of family relationship (parent, partner, sibling) between patient and caretaker on the FB [3]. These results demonstrate a poor consensus on the effect of the various variables studied on FB. This lack of consensus is in our opinion due to three factors: first, the fact that FB is often differently defined and operationalised in the different studies; some studies refer only to the objective aspects of FB, others only to the subjective factors, and a third group to both. Second, the timeperiod questioned in the different studies varies from 1 week
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to 6 months. And third, in most studies only one or a few variables are examined, and therefore, other variables than the one studied, may also have had an effect on the FB. In our study we would like to overcome these deficiencies by: (1) including both the objective and subjective aspects of burden in the operationalisation of FB, (2) examining a time period, 4 weeks; that is long enough to obtain a clear and correct view of the FB, and at the same time, not too long, to ensure that family members can remember well what happened and therefore give reliable answers, (3) studying the various factors in one exhaustive study, (4) use a face-to-face, semi-structured interview. Using a semi-structured interview will enable us to obtain the most complete and valid information and is therefore preferred above other instruments in research on FB [13]. 2. Objectives The objective of this study is to acquire more information on the variables that determine both objective and subjective family burden. This goal is twofold: (1) we are interested in quantifying important variables related to the family burden of family members of schizophrenic and schizo-affective patients for the Belgian population and (2) we are interested in acquiring more insight in the variables that generate a vast mount of burden so mental health professionals can take this into account. 3. Subjects and methods 3.1. Subjects Family members were asked to participate in the study when the patient was receiving in- or outpatient treatment at the university psychiatric hospital Saint Joseph (Kortenberg, Belgium) or outpatient treatment at the hospital Saint Alexius (Brussels, Belgium). Also partners and parents who are a member of Similes (a self-help group for family members of psychiatric patients) were asked to participate in our study (Louvain, Antwerp and Malines, Belgium). The patients in this latter group were both in- and outpatients. The patients receiving inpatient treatment stay in the hospital the entire day and were only allowed to go home 1 or 2 days during the weekend. Outpatient treatment on the other hand means that the patient is treated on an ambulatory basis at the outpatient clinic or in private practice. Family members were only included as respondents in the study if the patient had been diagnosed with schizophrenia or a schizo-affective disorder on Axis I of the DSM-III-R by the psychiatrist and was receiving psychiatric treatment at the moment of the interview. Family members of patients with another diagnosis on Axis I of the DSM-III-R were excluded from the study. The family member was always the parent or partner of the patient. They were only included in the study if they were the main caretaker of the patient, i.e. the outpatient lived with
them on a regularly basis, the inpatient stayed at their home during the weekends or if discharged from the hospital, they were involved in the daily care of the patient such as laundry, insurance, medical treatment, etc. All partners and parents who provided care for the patient were included in the study if both themselves and the patient fulfilled the inclusion and exclusion criteria. No judgments were made regarding the physical or mental health of the family member. After the goal of the study was explained, the family members were asked to participate in the study by the psychiatrist who was responsible for the care of the patient (informed consent). When the family member agreed to participate, he/she was contacted by phone by the research psychologist and an appointment was made. One hundred and seventeen family members of patients receiving treatment at the university hospital, 12 family members of patients receiving treatment at the night hospital and 11 family members of Similes agreed to participate in our study. Only 17 family members who were asked to participate in our study refused to do so. 3.2. Methods The interview for family burden (IFB), a semi-structured interview developed by Kluiter et al. [6], was used as an instrument for measuring the FB. Recent analyses by Kramer [7] have shown that the IFB is a reliable and valid instrument. More specifically, a high degree of inter-rater reliability of the separate items (the average weighted kappa was 0.90), a good internal consistency of the different scales (Cronbach’s alpha varies from 0.69 to 0.90) and a good construct and content validity were displayed. The IFB also displays a high sensitivity to change. The IFB examines the socio-demographic data of the patient and the family member, together with the clinical record, current treatment and symptomatic behaviour of the patient. This symptomatic behaviour is divided into three sub-scales; (1) depressive and anxious symptomatic behaviour, (2) disorganised symptomatic behaviour and (3) negative symptomatic behaviour [7]. For a list of 39 symptoms the respondents had to indicate on a four point scale whether in the past 4 weeks they had been confronted with the specific symptomatic behaviour: not at all (=0), now and then, i.e. 1–8 days (=1), quite frequently, i.e. 9–20 days (=2) or frequently, i.e. more than 20 days (=3). Each scale score is obtained by adding together the scores for each of the symptoms of that scale. The minimum and maximum values for the depressive and anxious symptomatic behaviour scale are 0 and 15, for the disorganised symptomatic behaviour scale 0 and 45 and for the negative symptomatic behaviour scale 0 and 24. The IFB measures also the following burden variables (on a four point scale: not at all (=0), now and then, i.e. 1–8 days (=1), quite frequently, i.e. 9–20 days (=2) or frequently, i.e. more than 20 days (=3)): (1) practical/domestic tasks; efforts on behalf of patient, exchanging tasks, extra work; (2) atmo-
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Table 1 Socio-demographic data of the respondent and the patient Respondent Gender Male Female Civil status Unmarried Married Divorced Widow/widower Diploma Only primary school Only secondary school Higher education Professional status Active Unemployed Invalidity Retired
Frequency
Percentage (%)
Patient
Frequency
Percentage (%)
46 104
31 70
Male Female
103 47
69 31
8 105 16 21
5 70 11 14
Unmarried Married Divorced Widow/widower
119 25 5 1
79 17 3 1
26 73 5
17 49 34
only primary school Only secondary school Higher education
12 106 32
8 71 21
66 7 11 62
47 5 7 41
Active Unemployed Invalidity Student Retired
44 8 72 13 10
29 6 50 9 7
sphere in house; tense atmosphere, rows; (3) emotional consequences; emotional burden and the concerns of the respondent for the other family members. The emotional burden scale consists of the sum of the following scales [4]: (1) concerns for the patient and for oneself, (2) the extent of inconvenience and (3) the extent to which one felt burdened; (4) major incidents: inconvenience for family member, break in contact with family/acquaintances; (5) financial contribution of the family for the patient in the past year. Unless indicated otherwise, these burden variables always relate to the 4 weeks preceding the interview. The interview was recorded by two female psychologists trained in recording and scoring the IFB. The average recording time was 105 min. The main statistical methods used in our study are: (1) analysis of variance (ANOVA), to study the effect of the treatment setting, the length of the respective treatment and the relationship between respondent and patient on the different burden variables, and (2) Pearson correlation coefficient, to examine the correlation between the different burden variables and (a) the symptomatic behaviour of the patient, (b) the length of illness and number of admissions, and (c) the age of the respondent. Pearson correlations were used since we can assume that the dependent variables (i.e. the burden variables) studied are situated on an interval-level. 4. Results 4.1. Socio-demographic data of the respondents and patients See also Table 1. Of the 150 respondents who took part in the interview, 69% were women and 31% men. Seventy percentage of the respondents were married or cohabiting, 34% had a higher or university education diploma and 42% were retired at the time of the interview. More family members of male (69%) than female patients (31%) took part in the study.
The average age of the patients was 33 (S.D. = 8.69; range = 51, with minimum = 17 and maximum = 68), most of them had never been married or had never cohabited (79%). At the time of the interview, 79% of them were on disability, 9% were students, 7% were in paid employment and 5% received unemployment benefits. 4.2. Duration of illness and number of admissions The duration of the illness was operationalised as the number of years since the first psychiatric admission. Patients had been ill for an average of 9 years (M = 9.14; S.D. = 6.55; range = 28, with minimum = 0 and maximum = 28) and had been hospitalised on average four times (M = 3.79; S.D. = 3.17; range = 24). 4.3. Current treatment setting At the time of the interview, 69 patients (46%) were receiving outpatient treatment, 64 patients (43%) were hospitalised and 17 patients (11%) were receiving day treatment. The outpatient treatment consisted of a regular visit (weekly/bi-weekly) to the psychiatrist. The patients lived mainly with their family. Patients in the day treatment programme lived mainly in sheltered housing, under the supervision and the guidance of a psychiatric hospital. During the week they came daily to the hospital to attend their treatment programme, and they had a weekly appointment with their psychiatrist. Patients in the inpatient treatment programme, were staying in the hospital and were allowed to visit home (parents, partners) every weekend. The day patient data were analysed together with the hospitalised group since they all lived in sheltered housing during the week. The total number of patients in the outpatient treatment group was 69 and the total number of patients in the hospitalised treatment group was 81. The length of treatment was broken down into less than and more than 1 year in treatment. Of the patients
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receiving outpatient treatment, 40 (27%) had been receiving treatment for more than 1 year and 30 for less than 1 year (20%). As far as the hospitalised patients were concerned, 41 patients had been admitted for less than 1 year (27%) and 39 for more than 1 year (26%). 4.4. Symptomatic behaviour This scale represents the amount of symptoms the family member reported. The average score for the sub-scale (0–45) “disorganised symptomatic behaviour” was 3.5, for the subscale (0–24) “negative symptomatic behaviour” 4.19 and for the sub-scale (0–15) “depressive symptomatic behaviour” 2.13. On average, patients had attempted suicide 0.7 times during their life. 4.5. The burden variables 4.5.1. Practical/domestic tasks Efforts: encourage patient into activity, supervise medication and accompany him/her if he/she has to go anywhere. Respondents had made an average of four (S.D. = 4) efforts in the past 4 weeks. Taking over tasks: The average number of tasks that the patient carried out himself/herself before the onset of the illness or would do himself/herself under normal circumstances and which were taken over by the respondent following the onset of the illness (wholly/in part) was 2.7. For 45% this consisted of making decisions regarding major expenditure and doing the shopping, for 29% of maintaining contacts with family/acquaintances, for 53% of menial work (including washing clothing), for 53% of carrying out repairs or minor chores and for 56% of sorting out affairs with official institutions. Quantity of extra work: over the past 4 weeks, 38% had not had any extra work, 27% had had a little extra work, 17% quite a lot of extra work and 18% a great deal of extra work. 4.5.2. Atmosphere in house Mood: in a little more than half (54%) the families the atmosphere had been good over the past 4 weeks, for 31% slightly tense, for 10% fairly tense and for 5% extremely tense. Rows: for 78% of the respondents there had not been any rows relating to the psychiatric problems of the patient, for 19% occasionally, for 2% quite often and 1% admitted having rows very often. 4.5.3. Major incidents Inconvenience: inconvenience for the actual respondent refers to behaviour by the patient, which results in inconvenience for the respondent such as: use of violence, excessive noise and preventing the respondent from sleeping at night. Eighty percentage of the respondents did not suffer any inconvenience, 19% mild inconvenience and 1% significant inconvenience. Ever left/threatened to leave home: this question relates to the entire period since the first psychiatric admission of the
patient. Seven percentage of respondents said a family member had permanently left home because of the patient’s problems. Twelve percentage said a family member had merely threatened to leave home and 81% said no one had either left or threatened to leave home. Ever broken off contact: for most respondents (69%), contact with friends/family had never been broken off because of the patient’s problems, but 31% said contact with certain friends/acquaintances had lost momentum or had actually been broken off. 4.5.4. Financial contribution The financial contribution relates to the total cost of the family’s expenditure on the patient during the past year. Eleven percentage of respondents had a net monthly family income of between 496 and 744 Q, 27% between 744 and 1239 Q, 23% between 1239 and 1735 Q and 20% between 1735 and 2479 Q. Nineteen percentage had a monthly family income greater than 2479 Q. The average financial contribution during the year prior to the interview was estimated by respondents at 2623 Q, with a minimum of 0 and a maximum of 13 277 Q. 4.5.5. Emotional consequences Emotional burden: the average score on the emotional burden scale is 8.80 (S.D. = 7.42; minimum = 0, maximum = 39). Only an extremely small percentage of respondents (2%) said they had never been burdened emotionally. Concern for other family members due to disturbance caused by the patient: Fifty-two percentage of respondents never worried about the other members of the family, 30% were occasionally worried, 9% quite a lot and a further 9% were continuously worried about their partner and/or other children. 4.6. Identification of variables associated with FB With a 2 (outpatient/admission) × 2 (less than 1 year/more than 1 year in treatment) × 2 (parent/partner) ANOVA, the effect of the treatment setting (outpatient/admission), the length of the respective treatment (less than 1 year/more than 1 year), the relationship between respondent and patient (parent/partner) and possible interaction effects were investigated. For an overview see Table 2. Treatment setting: the results of our study show no significant effects for the treatment setting. Length of treatment: our analyses show that family members of patients who are treated for less than 1 year show significantly more concern for other family members (P < 0.014) than family members of patients treated for more than 1 year. Relationship: a significant effect (P < 0.039) was found for the total number of tasks taken over, whereby parents had taken over significantly more tasks from the patient than partners. The total financial cost for the past year also varied significantly (P < 0.010) for parents and partners; parents had on average spent 3115 Q on the patient, while for partners this
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Table 2 The analysis of variance (ANOVA) of effect of the treatment setting, the length of the respective treatment and the family relationship on the FB Practical Efforts Taking over tasks Quantity of extra work Atmosphere at home Mood Rows Emotional consequences Emotional burden Concern for others Major incidents Inconvenience Severed contact Left/threatened to heave home Financial contribution Total cost
Treatment setting
Length of treatment
Family relationship
Setting and relationship
Length and relationship
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. P < 0.039 n.s.
n.s. P < 0.002 P < 0.001
n.s. n.s. n.s.
n.s. n.s.
n.s. n.s.
P < 0.016 n.s.
n.s. n.s.
n.s. P < 0.033
n.s. n.s.
n.s. P < 0.014
n.s. n.s.
P < 0.040 n.s.
n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s. n.s. n.s.
n.s.
n.s.
P < 0.010
n.s.
n.s.
was only 670.5 Q. Finally, the mood at home had also been significantly (<0.016) different for parents and partners, whereby parents had experienced more stress than partners. Interaction effects: a significant interaction effect was found between treatment setting and relationship for the following three variables: (1) the total number of tasks taken over (P < 0.002), whereby parents had taken over more tasks when the patient was being treated as an outpatient and partners had taken over more tasks if the patient was admitted, (2) the amount of extra work (P < 0.001), whereby partners had had more extra work for the patient if he/she was admitted and parents had had more extra work if the patient was being treated as an outpatient, and (3) the emotional burden (P < 0.040). A second significant interaction effect was found between the length of treatment and the relationship (P < 0.033): parents reported more rows if the patient was treated for less
than 1 year, and partners experienced more rows if the patient was treated for more than 1 year. 4.7. Correlations The link between the different burden variables and (1) the symptomatic behaviour of the patient, (2) the length of illness and number of admissions and (3) the age of the respondent and the patient was calculated using Pearson correlations (see Table 3). There is a positive correlation between the total amount of symptomatic behaviour and the different burden variables. The more symptomatic behaviour the family member reported, the more efforts family members had made, the more extra work they had had, the worse the mood had been at home, the more emotionally burdened they had felt, the more often other family members had left home or threatened to do so and the more inconvenience had been experienced.
Table 3 The relationship between burden variables and clinical and demographic variables (Pearson correlations) Load variables Practical Efforts Taking over tasks Quantity of extra work Atmosphere at home Mood Rows Emotional consequences Emotional burden Concern for others Major incidents Inconvenience Severed contact Left/threatened to heave home Financial contribution Total cost *
Total symptom
Length of illness
Number of admissions
Age of respondent
Age of patient
0.596 * 0.182** 0.272 *
0.083 0.144 –0.089
0.074 0.101 0.096
–0.028 0.218* 0.065
–0.054 0.05 –0.127
0.482 * 0.096
–0.076 –0.065
0.045 –0.058
0.048 0.006
–0.155 –0.113
0.557 * 0.137
0.027 –0.092
0.136 0.103
–0.116 0.041
–0.066 –0.082
0.319 * 0.094 0.212**
–0.057 0.045 0.074
–0.006 0.245* –0.04
0.005 –0.112 –0.07
–0.063 –0.02 0.012
–0.139
–0.023
0.094
–0.243*
–0.037
Correlation is significant at the 0.01 level. ** Correlation is significant at the 0.05 level.
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No link was found between the age of the respondent and the various burden variables, except for exchanging tasks (P < 0.01): the older the respondent, the more tasks he/she had taken over from the patient. As far as the age of the patient is concerned, a significant correlation (P < 0.01) was only found with the total financial costs during the past year, which points to the fact that respondents contributed more financially the younger the patient was. There was a positive correlation (P < 0.01) between the number of times the patient was admitted and the contact with family and friends of the respondent that was severed or lost: more contacts were severed or lost the more times the patient had been admitted. 5. Discussion The goal of our study was twofold: to acquire more insight into the amount and extent of FB family members of schizophrenic patients experience and to gain a better understanding of the factors that influence the FB. Although previous studies had examined the influence of the symptom–behaviour of the patient [2–4,14,15], the duration of the illness [1,3,15], the length of treatment [5], the treatment setting [17] and the family relationship (parent, partner, sibling) between patient and caretaker [11] on the FB, no clear findings were obtained. This can, in our opinion, be attributed to certain shortcoming, i.e. the fact that FB was differently defined and operationalised in the different studies; that the time-period questioned in the different studies varied and that in most studies only one or a few variables were examined, and therefore, other variables than the one studied, may also have had an effect on the FB. In this study we have attempted to overcome these shortcomings. The large majority of the respondents in our study were women. This over-representation of female family members in the investigations of family members of schizophrenic patients has already been highlighted by Schene and van Wijngaarden [15]. It can partly be explained by the fact that mothers often still have the responsible role in looking after family members, especially when these members require help [15]. 5.1. The FB Our investigation showed that both parents and partners are closely involved in caring for their psychiatrically ill family member, both on a practical and an emotional level. Family members made considerable efforts for the patient and took over various tasks from him/her, after he/she became ill. Nor was the financial contribution negligible: family members had spent on average 2623 Q on the patient during the year prior to the interview. And this is likely to be an underestimate. Parents often mentioned that they felt inhibited in adding up the expenditure (because they worried that it would seem as if they ‘resented’ the expenses). It is
clear that the money family members spent, concerns a considerable financial burden that needs to be recognised by the clinicians and other professionals involved in the treatment of the patient, as well as by the government and those responsible for the health insurance. The consequences of the psychiatric illness of the patient were also felt by the respondent on an emotional level, and this in the form of a tense atmosphere at home, rows and a loss of contact with certain family members and friends. Only a very small percentage of the respondents (2%) said not having felt emotionally burdened. Although Schene and van Wijngaarden [15] object to expressing and measuring the FB in subjective terms, since according to them, this says more about the personal style of the respondent than about the actual burden, we strongly believe that the emotional burden is a very valuable result variable. It has been shown [7] that this variable, which informs us about how burdened the responsible family member feels, indicates whether the respondent’s “supporting power” has been exceeded or not. We think it is important to check this with the family members, since it can have important consequences for the care of the patient; a family member who feels over-burdened will not be able to provide the necessary and important care. And this care by family members becomes increasingly important, because of the growing trend towards deinstitutionalisation in psychiatry. 5.2. The variables associated with the FB Our results also show that family members of patients who have been treated for less than 1 year worry more about the other members of the family than family members of patients who have been receiving treatment for more than 1 year. This suggests that in the initial phase of treatment the caregiver worries not only about the patient but also about the other members of the family and how they are dealing with the mental illness of the patient. This can therefore create an additional “burden” for the main caregiver. A study by Smith and Birchwood [16] shows that psycho-education can significantly reduce the FB family members experience. We therefore believe it is appropriate for psycho-education sessions to be offered to the whole family, so that all the family members are properly informed about the course and the consequences of the patient her/his illness and can share his/her concerns with professionals and other family members. No other effect of the length of treatment on FB has been found. This is in accordance with the findings of other studies [1,5]. In contrast to what one would expect, family members of patients that were treated in an outpatient setting (and thus living at home) did not experience more FB than family members of the hospitalised patients. This probably means that the emotional and the practical burden family members of patients suffering from schizophrenia experience is high and this regardless whether the patient lives at home or stays in the hospital. Another finding of our study is that parents had taken over more tasks from the patient than partners, that they had
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contributed more financially and that the mood at home had been tenser for parents than for partners. The fact that parents, in contrast to partners, are usually the carers when the illness begins (and the patient is therefore frequently actively psychotic) can probably partly explain this effect. Nevertheless, this last result must be interpreted with the necessary caution, given that the interviewed partners had sometimes suffered from a psychiatric disorder themselves and had therefore not always experienced the disturbance caused by the patient in the same way the parents did. The results of our study did not show any other effects of the family relationship on the FB. Results from other studies confirm this finding [3,17]. A very significant link was found between the amount of symptomatic behaviour on the one hand and the FB on the other. This finding was in line with the results of the studies of Schene and van Wijngaarden [15] and Kramer [7] that showed that the more symptoms of the patient that were reported by the family member, the more FB he/she experienced. No support was found in our study for the results of other investigations that indicated that either positive or disorganised symptoms [3] or negative symptoms [2,4,14] created the greatest burden. The fact that our study did not find any differences in FB between positive and negative symptoms, can possibly be explained by the fact that the symptombehaviour in our study, as well as in the study of Schene and van Wijngaarden [15] and Kramer [7], was measured by asking the family member about the symptoms. One can expect that, when the symptoms are rated by a mental health professional, like in the other studies, a better and more precise differentiation between the symptoms is obtained. Further research, in which not only the respondent, but also the clinician who is treating the patient, independently scores the amount of symptomatic behaviour is therefore needed. This further research needs also to ensure us that the effect found of the quantity of symptom behaviour on FB, is not a result of the fact that family members who say they feel more burdened also report more symptomatic behaviour of the patient. To summarise, we can conclude from the first part of our study that family members taking care of their schizophrenic or schizo-affective partner or child, do experience a vast amount of burden, both on a practical and an emotional level. The second aim of our study was partly obtained. Even when meeting the constraints of former studies, little more insight is gained from this part of the study. The only sound effect found, is that the quantity of the symptoms of the patient strongly influence the FB. This indicates that an adequate treatment of symptoms does not only benefit the patient, but all the persons that are concerned. Finally, we wish to point out that studying the FB only sheds light on one aspect of the relationship between family members and the patient, whereby the term “burden” has a predominantly negative connotation. Although the consequences that an illness such as schizophrenia involves for the family members are extremely far-reaching, various respon-
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dents clearly stated that their relationship did not only consist of “burdensome” experiences. Some respondents pointed out that they often got something out of caring for the patient, such as a much more solid relationship with their family member than before the onset of the illness. Acknowledgements This study was made possible by an educational grant from Eli Lilly and Company. References [1]
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