International Journal of Psychiatry in Clinical Practice
ISSN: 1365-1501 (Print) 1471-1788 (Online) Journal homepage: http://www.tandfonline.com/loi/ijpc20
Can we identify the factors influencing the burden on family members of patients with schizophrenia? B Lowyck, M de Hert, E Peeters, P Gilis, J Peuskens To cite this article: B Lowyck, M de Hert, E Peeters, P Gilis, J Peuskens (2001) Can we identify the factors influencing the burden on family members of patients with schizophrenia?, International Journal of Psychiatry in Clinical Practice, 5:2, 89-96 To link to this article: http://dx.doi.org/10.1080/136515001300374812
Published online: 12 Jul 2009.
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2001 Martin Dunitz Ltd
International Journal of Psychiatry in Clinical Practice 2001 Volume 5 Pages 89 ± 96
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Can we identify the factors influencing the burden on family members of patients with schizophrenia? B LOWYCK,1 M DE HERT, 1 E PEETERS,1 P GILIS, 2 AND J PEUSKENS 1 Downloaded by [Nanyang Technological University] at 17:59 06 November 2015
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University Centre St. Jozef, Kortenberg, Belgium, and 2 Eli Lilly, Belgium
Correspondence Address Benedikte Lowyck/Marc De Hert, U.C. St. Jozef, Leuvensesteenweg 517, B-3070 Kortenberg Tel: ++(0) 2/7580511 E-mails: [email protected] [email protected] [email protected]
Received 9 June 2000, revised 19 September 2000, accepted for publication 23 September 2000
A growing number of studies reflects an increasing growing interest in the burden on the family (BF) of sufferers from schizophrenia. Many of these studies aim at revealing and identifying the variables that determine BF. This review compares and discusses the results of these studies. Although many variables, such as the diagnosis and symptoms of the patient, the duration of the illness, the treatment setting (outpatient/inpatient), the family relationship between the patient and the relative, and the type of family intervention (counselling and psycho-education) are examined in various studies, there is little consensus on which factors determine the extent and/or pattern of BF. In our opinion, this lack of consistency is mainly caused by: (1) the varieties of definitions and operationali zations of BF employed; (2) the fact that most studies examine only one or just a few variables, so that variables other than those examined may have varied between studies; and (3) the difference in the periods of time discussed in the different studies. To gain more insight into the factors that determine BF, a better standardizati on of the definition and operationali zation of BF, as well as of the period of time studied, is needed, as well as exhaustive studies examining the various factors that may determine BF. (Int J Psych Clin Pract 2001; 5: 89 ± 96) Keywords family burden
INTRODUCTION
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n the past, most studies of family members of psychiatric patients were motivated by a scientifi c interest in the role of family members in the development of the psychiatric disorder.1 Only limited attention was paid to the effect of the relative with a psychiatri c illness on the rest of the family. Recently there has been a growing interest in the burden experienced by family members of psychiatric patients. This increased attention is partly a result of the increase in de-institutionalization (which implies a shift of care), and partly due to the study of `expressed emotion’, which accepts that there is a close relationship between the burden on family members (BF), the way they cope with the burden and the evolution of the patient’s disorder.2 A number of recent studies aim at gaining more insight into the BF, in particular, to identify the factors which determine it. Here we analyse the literature on the factors influencin g the BF of family members of schizophrenic patients, to provide
schizophrenia
an overview of them. First, the methodology employed is discussed and the concept of BF is defined. Then, the variables related to the patient’s disorder (diagnosis , behaviour symptoms, duration of illness and type of treatment) are considered. Next, the effect of the family relationship between the patient and the family member on the burden is discussed. Finally, the effect of interventions on the burden experienced by family members is reported.
METHOD To gain more insight into the burden on the family, we reviewed the literature on the relevant factors which determine its extent and/or pattern. Our study includes only articles in which: (1) the concept of BF is a dependent variable; (2) the operationaliz ation of the BF concept is explicitly reported; (3) the instrument for measuring BF is mentioned; (4) the effect of at least one
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relevant variable on BF is examined; (5) the patients had a diagnosi s of schizophreni a (except for the studies in which the effect of diagnosis on BF was examined); and (6) family members/caregiver s of the psychiatric patient are concerned . The literature selection was made by consulting the MEDLINE and psycLIT databases, using the search words; `burden’, `burden of care’, `family burden’ and `family burden and relatives’, and by verifying the references of the selected articles. It was limited to studies published between 1976 and 1996, in the English or Dutch languages . Originall y 40 articles were selected, of which only 12 met the selection criteria describe d above and will be discussed in this study. The results of the differen t studies are discussed according to the variables (even when several variables were examined in a given study), grouped into three categories: (1) variables related to the patient’s disorder; (2) the family relationshi p between the patient and the family member; and (3) intervention variables.
RESULTS Hoenig and Hamilton, who were the first to study the burden on the family, distinguishe d between objective and subjective burden.3 They defined `objective burden’ as the observable and verifiable aspect of BF, e.g. disturbing behaviour of the patient or expenses incurred by the family member or caregiver on behalf of, and related to the illness of, the patient. `Subjective burden’ refers to, the extent to which family members feel burdened. This distinction between objective and subjective burden is also frequently made in the more recent literature on BF, in which `objective burden’ is defined as the material and observable consequence s of the patient’s illness, and `subjective burden’ as the emotional impact of the patient’s illness on the caregiver. In some cases, `distress’ is used as a measure of subjective burden. Platt defines BF as the presence of problems, difficulties or negative events which affect the life of the psychiatric patient’s relative.4 Pai and Kapur describe BF as the difficultie s experience d by family members of psychiatric patients. 5 Winefield and Harvey6 use the concept of BF to refer to disturbance s in the daily life of the family members, whereas Gopinath and Chaturvedi7 take it to mean the sadness and inconvenien ce experienced by family members due to the psychiatric disorder. Though the common characteristi c in the various definitions is the effect of the patient’s illness on the family, there is little consistency in the way BF is measured and operationalized. 4 Table 1 lists, in chronologic al order, the period of time studied, the measuring instruments used, the different operationaliz ations of BF, the patient population and the relatives’ population employed in the studies mentioned above.
VARIABLES Variable s related to the patient’s disorder Diagnosis MacCarthy and colleague s studied 45 family members of patients who had been treated as outpatients for at least 1 year and who lived with the family member interviewed.8 A distinction was made between the diagnostic categories of schizophreni a, bipolar and unipolar psychotic depression , and non-psychot ic disorders. BF was measured in an unspecifie d face-to-face interview ± except for the mental health of the relatives, which was measured with a 4-item scale. The interviewer examined for six problem areas (all defined as objective burden) by asking if the family member experienced this problem, and, if so, whether he/she attributed this problem to the care for the patient. Two measurement s of BF were obtained: (1) an overall level of BF and (2) an attributable amount of BF. The results reveal no significan t effect of the diagnosis on either. The impact of the patient’s diagnosis on BF was also studied by Pariante and Carpiniello .9 The BF of 32 family members of patients with schizophren ia and 32 family members of mentally retarded people were compared. These authors used a standardized semi-structur ed interview `The Assessmen t of Disability and Family Burden’.2 6 Seventeen problem areas were examined. For each area, family members were asked to indicate: (1) if the problem existed (objective burden); (2) the date of onset of the problem; (3) whether the problem was due to the illness of the patient; and (4) the degree of distress (measured using a 3-point scale) expressed by the interviewee (subjective burden). The validit y and the reliabilit y of the interview are known to be good. Their results show only a few quantitative difference s in BF between both groups (`conflict s with neighbours ’ were more frequent and more distressin g for relatives of patients with mental retardation, while `problems with other adults in the family’ were more distressin g among relatives of schizophreni cs). The results of a previous study by Carpiniell o and Pariante,3 0 revealed no differenc e in BF between family members of patients with schizophreni a and those of patients with chronic depression. Mueser and colleague s compared the subjective burden experience d by family members of patients with schizophrenia with that experienced by family members of patients with a bipolar disorder.1 0 A questionnair e was developed to assess the burden of 20 common problem behaviours associated with manic symptoms, positive symptoms and negative symptoms. For each question, relatives were asked to indicate on a 5-point Likert scale how frequently the problem occurred, and how much distress the problem caused. BF was operationaliz ed as the product of the frequency rating and distress rating. The validity of the questionnair e was proven to be high. Family members of patients with a bipolar disorder rated manic symptoms as more burdensome than did family members of patients with a schizophreni c disorder. However, no
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Table 1 Summary of the studies discussed
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Study
Measuring instrument and period of time
Definition of BF
Patient sample
Relatives sample
(1) Patient evaluation, (2) family evaluation (3) family problems due to patient. Some notspecified items of (3) reflect the family subjective distress and the family objective burden. Those items and a subjective evaluation by the interviewer are considered as BF.
Primary diagnosis: functional illness other than alcoholism, drug abuse or anti-social personality; schizophrenia was the most common diagnosis (63%).
Not mentioned
Herz et al (1976)1 9
Family Evaluation Form2 5 Past week
Gibbons et al (1984)1 1
Social Behaviour Objective measurement for each Assessment Schedule1 2 item: the severity of the patient’s Past month behaviour; subjective measurement: the family member’s emotional reaction to the behaviour. Items are related to patient functioning in social and household roles; and patient’s influence on family member’s health, on the children in the household and on other aspects of the household
All patients were diagnosed with 25% of the schizophrenia (for diagnostic supporters were method see1 1): 57% male, mean over 65 age = 40.2 years
Smith & Birchwood (1987)2 1
Family Distress Scale2 2 Patient’s impact in terms of (1) the extent of disturbance of family life, (2) inconveniences and (3) concern about oneself and the other family members
All patients were diagnosed with 70% parents, 17% schizophrenia (on the base of spouses, 13% other evidence of one or more `firstrelatives rank’ symptoms): 78% male, mean age 36.4 years
MacCarthy et al (1989)8
Interview to determine the objective burden and the 4-item scale (see Henderson et al)2 8 Past month
47% of the group suffered from schizophrenia, 27% from an affective psychosis, 13% from a neurotic disorder, 1 from early dementia and for 5 a definite diagnosis could not be given (based on development version of PSE-10). 57% male, mean age 48 years.
Objective burden on the family: problems with work experienced by family members, financial problems within the family, health and behaviour of each child and mental and physical health of the family member
31% parents, 56% spouses, 6 siblings and 1 friend. Elderly group, with 1/3 being of retirement age or over
Raj et al (1991)1 3 Interview Schedule for (1) Objective burden: financial Measuring the Burden5 burden, disturbance of family activities, recreation, interaction, and effect on the physical and mental health of the family members, (2) subjective burden: by a standard question (not specified)
All patients were diagnosed with Not mentioned schizophrenia (based on ICD-9) M:F ratio 3 : 2; 70% were between the ages of 20 and 35 years.
Gopinath & Chaturvedi (1992)7
All patients were diagnosed with 61% male; 48% schizophrenia (by Research above 35 years Diagnostic Criteria); 77% were younger than 35 years; 53% female
Scale for the Assessment of Family Distress2 9
Extent of `distress’ caused by activity-related, self-care-related, aggression-related, depressionrelated, and stressful positive and negative symptoms.
continued
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Table 1 Continued
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Study
Measuring instrument and period of time
Definition of BF
Patient sample
Relatives sample
Winefield & Harvey (1994)6
Non-specified (1) Objective burden: incursion structured interview2 0 on holidays, social relationships, family life and family relationships, household, interests and hobbies, sexual relationships and paid employment; (2) patient-related stress experienced by family members
All patients were diagnosed with schizophrenia (criteria not specified). 75% male, mean age 38 years
74% female; mean age 56.6 years; 69% parents, 17% siblings, 7% spouse and 4% child, and 2% another biological relative
Schene & van Wijngaarden (1994)1 5
Early version of the Involvement Evaluation Scale1 6 Past 4 weeks
Factor-analyses showed 4 burden factors: (1) tension, (2) worries, (3) stimulation and (4) keeping an eye on. A total burden score was also measured.
88% of patients diagnosed with schizophrenia, 5% with manicdepressive disorder and 5% with chronic psychosis (criteria not specified). 69% male; mean age 34 years
72% female; mean age 59.9 years; 75% parents, 13% sister/ brother, 7% partners
Xiong et al (1994)2 4
Non-specified scale Past 6 months
(1) Finances, (2) professional functioning, (3) emotional wellbeing of the healthy family members, (4) interpersonal family relationships, (5) social activities, (6) the total burden
All patients diagnosed with Not specified schizophrenia (DSM-III-R). 68% male; mean age at admission 31 years.
Cornwall & Scott Burden of Care (1996)1 7 Schedule1 8
Objective and subjective burden on an 18-item scale
46% psychotic or major affective 54% male disorder; 54% another diagnostic diagnosis.
Mueser et al (1996)1 0
A newly developed scale by authors
On a 5-point scale, the frequency and the discomfort for each symptom behaviour were measured. BF = frequency score multiplied by the discomfort score
56.2% diagnosis of schizophrenia or schizo-affective disorder; 43.8% diagnosis of bipolar disorder (chart-review)
64.6% female, 54.2% parent; mean age 52.4 years
Pariante & Carpiniello (1996)9
Assessment of Disability and Family Burden2 6 Past 6 to 8 weeks
The objective burden (whether or not a problem exists) and the subjective burden (the extent to which `distress’ is expressed by the family member) was studied in 17 problem areas.
Patients diagnosed with schizophrenia (DSM-III-R): 72% male, 28% female; mean age 35 years Patients with `mental retardation’ (they attended the `Italian Association for Assistance to Spastics’) 69% male, 31% female; mean age 13.8 years
Relatives of schizophrenic patients: 31% male and 69% female; mean age 52.1 years 59% parents, 19% husband or wife, 16% sister/brother and 6% other relatives. Relatives of mental retardation patients: mean age 44.5 years; 78% mother, 22% father
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difference in BF was observed between the two groups in their ratings of burden associated with positive or negative symptoms. The authors concluded that BF depends only weakly on psychiatric diagnosis and that therefore very little insight into BF can be gained from varying psychiatri c diagnoses. Behaviour symptoms Next to the effect of the diagnosis of the patient on BF, the influenc e of the characteristi cs of behaviour symptoms on BF has been examined. Gibbons and colleague s interviewed 183 people who lived with a family member with schizophren ia, in order to identify the most burdensome symptoms.1 1 They used the Social Behaviour Assessmen t Schedule,1 2 a standardized semistructured interview which investigates : (1) the patient’s behaviour in the last month (22 items); (2) the patient’s performanc e in social and domestic roles (12 items); and (3) the patient’s effect on the supporter’s health, on children in the household and on other househol d circumstance s (18 items). For each item there are two rating scales: objective (measurin g the severity of occurrence of the item) and subjective (a distress scale measuring the relatives’ emotional reaction to it). The inter-rater reliabilit y of the interview is known to be high. The results revealed that behaviour symptoms directed against family members, including rudeness and violence, together with behaviour symptoms resulting from an active psychosis , such as unpredictabil ity and bizarre ideas, caused severe distress. According to the authors, family members could more easily become resigned to chronic negative symptoms. Other studies, however, have reported contradictory results. 7 ,1 3 , 14 Raj and colleagues studied the BF experienced by 30 family members of patients with mainly positive symptoms (hallucinat ions, delusions and formal thought disorder) and 30 family members of patients with mainly negative symptoms (emotional withdrawal, alogia, apathy and anhedonia) .1 3 BF was measured with the Interview Schedule for Measuring Social Burden, a structured interview consisting of 24 items (objective burden). 5 The inter-rater reliabilit y and the content validit y have been reported to be high. Provision for assessing subjective burden was included by means of a standard question. BF was measured at inclusion and at follow-up (i.e. 6 months after inclusion) . At first interview, the family members of both groups experienced the same amount of burden (objective and subjective) . At follow-up, however, family members of patients with mainly negative symptoms reported significant ly more BF (objective and subjective) than did those of patients with mainly positive symptoms. A similar conclusion was drawn by Gopinath and Chaturvedi, who conducted a study of 62 family members of patients with schizophren ia, living with the respondents, with the aim of identifying the most burdensome symptoms. 7 The questions were administered with the Scale for Assessmen t for Family Distress,2 7 which lists various types of behaviour which cause distress to the
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family members. Relatives were asked to mention as many types of behaviour as possible, irrespectiv e of the amount of distress; and later to specify the amount of distress caused by each of the symptoms reported. The severity of distress was rated on a 5-point scale as well as in terms of percentage. Results revealed that the patient’s aggressiv e and threatening behaviour was not considered so stressful as was inactivity, lack of co-operation in househol d tasks, slowness and lack of personal hygiene. In their review article, Fadden et al too state that family members complain more about the patient’s depressed behaviour and hypochondri ac preoccupation s than about more visible symptoms, such as aggressivit y or socially inadequate behaviour .1 4 The finding of Raj et al1 3 that negative symptoms are generally considered more burdensome than positive symptoms, may be explained by the fact that family members do not attribute this negative behaviour to the patient’s condition, but consider it to be a type of behaviour which the patient can control. With respect to the quantity of behaviour symptoms, Schene and van Wijngaarden , in a study of 680 family members of psychotic patients, demonstrated that the more symptoms the patient shows (symptoms of agitation and apathy in particular) , the greater the BF will be.1 5 In this study the BF was assessed with the early version of the Involvemen t Evaluation questionnaire ,1 6 a questionnair e consisting of 88 multiple-choi ce questions, which was mailed to the relatives. Duration of illness In the previously cited study by Gibbons et al, the relationship between the duration of the patient’s disorder (schizophre nia) and the BF experienced by 193 family members was investigated.1 1 The results show that the time between the moment the BF was measured and the patient’s first contact with psychiatric assistance is inversely related to the (subjective) burden, i.e. the BF experienced tends to decline over time. Threequarters of patients with schizophreni a who had been ill for less than one year represented a moderate to great BF, compared to 46% of these patients who had been ill for more than 5 years. Similar results have been obtained by Cornwall and Scott, who studied the difference between BF at initial admission of patients with an acute psychiatric disorder and BF at follow-up 6 months later.1 7 BF was measured with the Burden of Care Schedule,1 8 which measures the objective and subjective burden on an 18item scale (items usually score 0 ± 4); higher scores are associated with greater burden. The results show a significan t reduction in the BF (objective and subjective) from the initial admission to 6 months later. The study by Schene and van Wijngaarden ,1 5 however, showed no effect of the duration of the disorder on BF. Treatment In a controlled study of 175 patients, Herz and colleague s examined whether BF varies with the period of treatment.1 9 For this purpose, three treatment groups were compared: (1) brief hospitalizatio n (mean, 11 days), followed by outpatient treatment; (2) brief hospitalizatio n (mean, 11 days) without subsequent outpatient treatment;
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and (3) standard hospitalizat ion for 60 days. The BF was measured at 3, 12 and 24 weeks. The instrument used is the Family Evaluation Form,2 5 consisting of a guided interview and an inventory of 455 items, grouped in 45 summary scales. Several items of the scale `Family difficultie s due to the patient’, reflect family burden. There were three summary measures of BF: (1) subjective distress in the family, due to the patient; (2) objective burden on the family, due to the patient; and (3) the interviewer’ s judgement of BF. The results do not reveal any significan t difference s in BF among the three treatment groups at 12 and 24 weeks, while at 3 weeks there were a few differences . The previously cited study by Cornwall and Scott 1 7 also examined the differenc e between the burden on family members of patients with an acute psychiatri c disorder who were hospitalized (n=17) and on family members of patients with the same disorder who were treated in the community (n=24). In this study too, no statistically significan t difference s were reported. Family relationshi p between the patient and the relative In the study mentioned previously , Gibbons and colleagues observed no effect of the family relationshi p (husband/wife/ parent/other) on BF (the distress score).1 1 Winefield and Harvey also examined the effect of the family relationshi p on the burden felt by 121 family members of schizophren ic patients. 6 They used a non-specifie d structured interview2 0 which the objective burden was measured with a checklist of seven possible problem areas. Caregiver s were also asked about the current sources of stress in their life, and the proportion of patient-related stress was calculated. The results differed from those obtained by Gibbons et al,1 1 since in this study parents and partners reported more stress than siblings and children . Variables related to an interventio n Smith and Birchwood investigated whether psycho-educa tion of family members reduces the burden on relatives living with a patient with schizophreni a.2 1 Information on the patient’s disorder was supplied either in 4-weekly group sessions led by professiona l caregivers, or in informatio n booklets sent 4-weekly by mail. Forty families were randomly assigne d to one of these groups. BF was measured at three moments in time: baseline, immediatel y after the education (post-education) and 6 months later (follow-up) . Smith and Birchwood employed the Family Distress Scale, (Pasamanick , 1967) a 22-item scale which measures the impact of having a schizophren ic relative in the family. 2 2 The reliabilit y of the instrument was proved to be high. The knowledge scores of both groups increase d significantl y from baseline to post-education and were maintained at 6 months follow-up. The relatives who had had group sessions acquired significantl y more informatio n than the relatives who had received booklets by post. There was no difference in the reported BF between baseline and post-education. However, there were significan t reductions in BF across both groups from the baseline to follow-up.
No correlation was found between the amount of knowledge acquired following education, and the reduction in the perceived burden, observed from baseline to follow-up. There is clear evidence that education reduced the burden experience d by family members, independent of the amount of knowledge acquired. Xiong and colleagues studied the effect of a family intervention on the burden on family members of 63 Chinese schizophreni c patients living at home.2 4 BF was examined with a non-specifie d scale which assesse d the effect of the patient’s illness on the the family’ s finances, work function, emotional well-being, interpersona l relationships in the family household, and social activities; an overall BF measure was also given. Family members were included at random either in a standard care group (n=29) or in a family intervention care group (n=34). Family intervention consisted of a monthly counsellin g session and a family meeting (group). These results also show a significan t reduction in BF (overall BF as well as finances, emotional well-being, interpersona l family relationship s and social activities) for the family members who followed the family intervention.
DISCUSSION This literature survey indicates that: (1) the patient’s psychiatric diagnosis has little effect on BF; (2) no consensus exists on the effect of the patient’s behaviour symptoms on BF; (3) there is no clear consensus on the effect of the duration of the patient’s illness on BF; (4) neither the length of hospitalizatio n nor the type of treatment affect BF; (5) no difference in the burden is found when it is compared between parents and partners, and the results of the studies on the difference between the burden on parents and partners on the one hand, and the patient’s children and siblings on the other, are not consistent; (6) family interventions (counselling , psychoeducation) appear to have a positive effect on BF. The studies discussed examine different variables which may affect BF. Given the current tendency toward deinstitutionali zation and the shift in care it implies, these studies are of great value, since they increase the understanding of the burden on the family, and more particularly of the factors which increase or reduce it. The understanding of BF can contribute toward the establishmen t of a care system which meets the requirements and needs of family members. At present, however, there is insufficien t agreement about the effect of the different variables on BF. This is partly due to three factors. First, the concept of the burden on family members is often defined and operationalized differently in the studies discussed.7 ,8,2 3 The second factor which may affect the consistency of the results is the differenc e in the time periods studied. Herz and colleagues 1 9 evaluated the week preceding the interview, whereas Xiong and colleagues2 4 asked about the BF experienced over a period of 6 months. Obviously , a lot of changes can
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occur over 6 months and answers will be less accurate after such a time interval. Finally, a third reason may be the fact that most studies examined only one or a few variables, and therefore variables other than the ones examined may differ between studies, and the fact that the variables that were not evaluated may have an effect on the burden experienced . To overcome these deficiencie s and gain more insight into the variables that determine the BF, it is important that in future studies on BF: (1) both the subjective and objective aspects of burden are included in the operationalization of BF; (2) the different variables discussed in the literature are examined in one exhaustive study; (3) the period examined is long enough to obtain a clear and correct view on the BF experienced , but not too long for family members to remember well what happened and to give the interviewer a reliable answer; (4) a standardized personal interview is used, since it obtains the most complete and valid information. Platt concluded from his evaluation of differen t rating scales for measuring BF that the semi-structur ed face-to-face interview is the best method for gathering informatio n about BF.4 Semistructured interviews have defined terms, fixed leading questions, and pre-coded ratings, and do allow the interviewer to ask for explanation if needed. Mail questionnaire s and telephone interviews are not recommended, since they produce a poor response rate and data of dubious reliabilit y and validity.4 An extensive study on BF is currently being conducted in the Universit y Psychiatri c Centre, Sint Jozef, Kortenberg,
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Belgium, which meets the criteria mentioned above, using the IBF (Interview voor de Belasting van de Familie, Interview for the Burden on the Family). This is a semistructured interview, developed by Kluiter and colleague s2 7 and adapted to the Belgian situation by our research group in 1997. Recent analyses have demonstrated that it is a reliable and valid instrument.2 3 This exhaustive study will offer a better understandin g of the factors that increase or reduce the burden experienced by family members. In that way we can contribute to the establishment of a care system which meets the requirement s and the needs of the family members as well.
KEY POINTS
· · · ·
More attention is being paid to the family burden of schizophreni c patients Family interventions such as counsellin g and psycho-educa tion appear to have a positive effect on the family burden There is little consensus on which factors determine the extent and/or pattern of family burden The lack of consensus is mainly caused by the varieties of definitions and operationaliza tions of family burden as well as by the different time periods addressed in the differen t studies
REFERENCES 1. Van Meer CR (1988) De belasting voor familieleden. In: Schizofrenie; recente ontwikkelingen in onderzoek en behandeling. (eds RJ van den Bosch et al). Van Loghum Slaterus, Deventer. 251 ± 67. 2. Schene AH (1986) Thuis bezorgd. Een literatuuronderzoek naar het verschijnsel `Burden on the family’. Nederlands centrum Geestelijke volksgezondheid, Utrecht. 3. Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Internat J Soc Psychiatry 12: 165 ± 76. 4. Platt S (1985) Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 15: 383 ± 93. 5. Pai S, Kapur RL (1981) The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry 138: 332 ± 5. 6. Winefield HR, Harvey EJ (1994) Needs of family caregivers in chronic schizophrenia. Schizophr Bull 20: 557 ± 66. 7. Gopinath PS, Chaturvedi SK (1992) Distressing behaviour of schizophrenics at home. Acta Psychiatr Scandinavica 86: 185 ± 8. 8. MacCarthy B, Lesage A, Brewin C et al (1989) Needs for care among the relatives of long-term users of day care. Psychol Med 19: 725 ± 36. 9. Pariante CM, Carpiniello B (1996) Family burden in relatives of schizophrenics and of people with mental retardation: a comparative study. Eur Psychiatry 11: 381 ± 5.
10. Mueser KT, Webb C, Pfeiffer M et al (1996) Family burden of schizophrenia and bipolar disorder: Perceptions of relatives and professionals.Psychiatr Services 47: 507 ± 11. 11. Gibbons JS, Horn SH, Powell JM et al (1984) Schizophrenic patients and their families. A survey in a psychiatric service based on a DGH Unit. Br J of Psychiatry 144: 70 ± 7. 12. Platt S, Weymann A, Hirsh S et al (1980) The Social Behaviour Assessment Schedule (SBAS): Rationale, contents, scoring and reliability of a new interview schedule. Soc Psychiatry 15: 43 ± 55. 13. Raj L, Kulhara P, Avasthi A (1991) Social burden of positive and negative schizophrenia. Internat J Soc Psychiatry 37: 242 ± 50. 14. Fadden G, Bebbington P, Kuipers L (1987) The burden of care: the impact of functional psychiatric illness on the patient’s family. Br J Psychiatry 151: 285 ± 92. 15. Schene AH, van Wijngaarden B (1994) Consequenties van psychotische stoornissen voor familieleden. Tijdsch Psychiatrie 36: 6 ± 19. 16. Schene AH, van Wijngaarden B (1991) De Betrokkenen Evaluatie Schaal (B.E.S.). Vakgroep Psychiatrie, Universiteit van Amsterdam. 17. Cornwall PL, Scott J (1996) Burden of care, psychological distress and satisfaction with services in the relatives of acutely mentally disordered adults. Soc Psychiatry Psychiatr Epidemiol 31: 345 ± 8.
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18. Creer C, Sturt E, Wykes T (1982) The role of relatives. Psychol Med Supp 2: 29 ± 39. 19. Herz MI, Endicott J, Spitzer R (1976) Brief versus standard hospitalisation: The families. Am J Psychiatry 331: 795 ± 801. 20. Winefield HR, Harvey EJ (1993) Determinants of psychological distress in relatives of people with chronic schizophrenia. Schizophrenia Bull 19(3): 619 ± 25. 21. Smith JV, Birchwood MJ (1987) Specific and non-specific effects of educational intervention with families living with a schizophrenic relative. Br J Psychiatry 150: 645 ± 52. 22. Pasamanick B, Scarpitti F, Dinitz S (1967) Schizophrenics in the community. Appleton-Century-Crofts. New York. 23. Kramer J (1998) Familieleden onder druk, de ontwikkeling en psychometrische beoordeling van het interview voor de belasting van de familie. (Vakgroep Sociale Psychiatrie), Rijksuniversiteit Groningen. 24. Xiong W, Philips MR, Xiong H et al (1994) Family-based intervention for schizophrenic patients in China: A randomised controlled trial. Br J Psychiatry 165: 239 ± 47.
25. Spitzer RL, Gibbon M, Endicott J (1971) Family Evaluation Form. New York Biometrics Research Unit. New York State Department of Mental Hygiene. 26. Morosini PC, Veltro F, Cerreta A (1998) DisabilitaÁ sociale e carico familiare: studio di riproducibilitaÁ di un nuovo strumento di valutazione (Social disability and family burden: a reliability study of a new evaluation instrument). Rivista sperimentale di freniatria 112: 541 ± 63. 27. Kluiter H, Kramer JJAM, Wiersma D et al (1997) Interview voor de belasting van de familie. Department Sociale Psychiatrie, Rijksuniversiteit Groningen. 28. Henderson S, Byrne DG, Duncan-Jones P (1981) Neurosis and the Social Environment. Academic Press, Australia. 29. Gopinath PS, Chaturvedi SK (1986) Measurement of distressful psychotic symptoms perceived by the family; preliminary findings. Int J Psych 28: 343 ± 45. 30. Carpiniello B, Pariante CM (1993) Carico Familiare e depressione Cronica (Family Burden and Chronic Depression). Gnosis-Esperienze Neuropsich 1: 298 ± 302.
ISSN: 1365-1501 (Print) 1471-1788 (Online) Journal homepage: http://www.tandfonline.com/loi/ijpc20
Can we identify the factors influencing the burden on family members of patients with schizophrenia? B Lowyck, M de Hert, E Peeters, P Gilis, J Peuskens To cite this article: B Lowyck, M de Hert, E Peeters, P Gilis, J Peuskens (2001) Can we identify the factors influencing the burden on family members of patients with schizophrenia?, International Journal of Psychiatry in Clinical Practice, 5:2, 89-96 To link to this article: http://dx.doi.org/10.1080/136515001300374812
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2001 Martin Dunitz Ltd
International Journal of Psychiatry in Clinical Practice 2001 Volume 5 Pages 89 ± 96
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Can we identify the factors influencing the burden on family members of patients with schizophrenia? B LOWYCK,1 M DE HERT, 1 E PEETERS,1 P GILIS, 2 AND J PEUSKENS 1 Downloaded by [Nanyang Technological University] at 17:59 06 November 2015
1
University Centre St. Jozef, Kortenberg, Belgium, and 2 Eli Lilly, Belgium
Correspondence Address Benedikte Lowyck/Marc De Hert, U.C. St. Jozef, Leuvensesteenweg 517, B-3070 Kortenberg Tel: ++(0) 2/7580511 E-mails: [email protected] [email protected] [email protected]
Received 9 June 2000, revised 19 September 2000, accepted for publication 23 September 2000
A growing number of studies reflects an increasing growing interest in the burden on the family (BF) of sufferers from schizophrenia. Many of these studies aim at revealing and identifying the variables that determine BF. This review compares and discusses the results of these studies. Although many variables, such as the diagnosis and symptoms of the patient, the duration of the illness, the treatment setting (outpatient/inpatient), the family relationship between the patient and the relative, and the type of family intervention (counselling and psycho-education) are examined in various studies, there is little consensus on which factors determine the extent and/or pattern of BF. In our opinion, this lack of consistency is mainly caused by: (1) the varieties of definitions and operationali zations of BF employed; (2) the fact that most studies examine only one or just a few variables, so that variables other than those examined may have varied between studies; and (3) the difference in the periods of time discussed in the different studies. To gain more insight into the factors that determine BF, a better standardizati on of the definition and operationali zation of BF, as well as of the period of time studied, is needed, as well as exhaustive studies examining the various factors that may determine BF. (Int J Psych Clin Pract 2001; 5: 89 ± 96) Keywords family burden
INTRODUCTION
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n the past, most studies of family members of psychiatric patients were motivated by a scientifi c interest in the role of family members in the development of the psychiatric disorder.1 Only limited attention was paid to the effect of the relative with a psychiatri c illness on the rest of the family. Recently there has been a growing interest in the burden experienced by family members of psychiatric patients. This increased attention is partly a result of the increase in de-institutionalization (which implies a shift of care), and partly due to the study of `expressed emotion’, which accepts that there is a close relationship between the burden on family members (BF), the way they cope with the burden and the evolution of the patient’s disorder.2 A number of recent studies aim at gaining more insight into the BF, in particular, to identify the factors which determine it. Here we analyse the literature on the factors influencin g the BF of family members of schizophrenic patients, to provide
schizophrenia
an overview of them. First, the methodology employed is discussed and the concept of BF is defined. Then, the variables related to the patient’s disorder (diagnosis , behaviour symptoms, duration of illness and type of treatment) are considered. Next, the effect of the family relationship between the patient and the family member on the burden is discussed. Finally, the effect of interventions on the burden experienced by family members is reported.
METHOD To gain more insight into the burden on the family, we reviewed the literature on the relevant factors which determine its extent and/or pattern. Our study includes only articles in which: (1) the concept of BF is a dependent variable; (2) the operationaliz ation of the BF concept is explicitly reported; (3) the instrument for measuring BF is mentioned; (4) the effect of at least one
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relevant variable on BF is examined; (5) the patients had a diagnosi s of schizophreni a (except for the studies in which the effect of diagnosis on BF was examined); and (6) family members/caregiver s of the psychiatric patient are concerned . The literature selection was made by consulting the MEDLINE and psycLIT databases, using the search words; `burden’, `burden of care’, `family burden’ and `family burden and relatives’, and by verifying the references of the selected articles. It was limited to studies published between 1976 and 1996, in the English or Dutch languages . Originall y 40 articles were selected, of which only 12 met the selection criteria describe d above and will be discussed in this study. The results of the differen t studies are discussed according to the variables (even when several variables were examined in a given study), grouped into three categories: (1) variables related to the patient’s disorder; (2) the family relationshi p between the patient and the family member; and (3) intervention variables.
RESULTS Hoenig and Hamilton, who were the first to study the burden on the family, distinguishe d between objective and subjective burden.3 They defined `objective burden’ as the observable and verifiable aspect of BF, e.g. disturbing behaviour of the patient or expenses incurred by the family member or caregiver on behalf of, and related to the illness of, the patient. `Subjective burden’ refers to, the extent to which family members feel burdened. This distinction between objective and subjective burden is also frequently made in the more recent literature on BF, in which `objective burden’ is defined as the material and observable consequence s of the patient’s illness, and `subjective burden’ as the emotional impact of the patient’s illness on the caregiver. In some cases, `distress’ is used as a measure of subjective burden. Platt defines BF as the presence of problems, difficulties or negative events which affect the life of the psychiatric patient’s relative.4 Pai and Kapur describe BF as the difficultie s experience d by family members of psychiatric patients. 5 Winefield and Harvey6 use the concept of BF to refer to disturbance s in the daily life of the family members, whereas Gopinath and Chaturvedi7 take it to mean the sadness and inconvenien ce experienced by family members due to the psychiatric disorder. Though the common characteristi c in the various definitions is the effect of the patient’s illness on the family, there is little consistency in the way BF is measured and operationalized. 4 Table 1 lists, in chronologic al order, the period of time studied, the measuring instruments used, the different operationaliz ations of BF, the patient population and the relatives’ population employed in the studies mentioned above.
VARIABLES Variable s related to the patient’s disorder Diagnosis MacCarthy and colleague s studied 45 family members of patients who had been treated as outpatients for at least 1 year and who lived with the family member interviewed.8 A distinction was made between the diagnostic categories of schizophreni a, bipolar and unipolar psychotic depression , and non-psychot ic disorders. BF was measured in an unspecifie d face-to-face interview ± except for the mental health of the relatives, which was measured with a 4-item scale. The interviewer examined for six problem areas (all defined as objective burden) by asking if the family member experienced this problem, and, if so, whether he/she attributed this problem to the care for the patient. Two measurement s of BF were obtained: (1) an overall level of BF and (2) an attributable amount of BF. The results reveal no significan t effect of the diagnosis on either. The impact of the patient’s diagnosis on BF was also studied by Pariante and Carpiniello .9 The BF of 32 family members of patients with schizophren ia and 32 family members of mentally retarded people were compared. These authors used a standardized semi-structur ed interview `The Assessmen t of Disability and Family Burden’.2 6 Seventeen problem areas were examined. For each area, family members were asked to indicate: (1) if the problem existed (objective burden); (2) the date of onset of the problem; (3) whether the problem was due to the illness of the patient; and (4) the degree of distress (measured using a 3-point scale) expressed by the interviewee (subjective burden). The validit y and the reliabilit y of the interview are known to be good. Their results show only a few quantitative difference s in BF between both groups (`conflict s with neighbours ’ were more frequent and more distressin g for relatives of patients with mental retardation, while `problems with other adults in the family’ were more distressin g among relatives of schizophreni cs). The results of a previous study by Carpiniell o and Pariante,3 0 revealed no differenc e in BF between family members of patients with schizophreni a and those of patients with chronic depression. Mueser and colleague s compared the subjective burden experience d by family members of patients with schizophrenia with that experienced by family members of patients with a bipolar disorder.1 0 A questionnair e was developed to assess the burden of 20 common problem behaviours associated with manic symptoms, positive symptoms and negative symptoms. For each question, relatives were asked to indicate on a 5-point Likert scale how frequently the problem occurred, and how much distress the problem caused. BF was operationaliz ed as the product of the frequency rating and distress rating. The validity of the questionnair e was proven to be high. Family members of patients with a bipolar disorder rated manic symptoms as more burdensome than did family members of patients with a schizophreni c disorder. However, no
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Table 1 Summary of the studies discussed
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Study
Measuring instrument and period of time
Definition of BF
Patient sample
Relatives sample
(1) Patient evaluation, (2) family evaluation (3) family problems due to patient. Some notspecified items of (3) reflect the family subjective distress and the family objective burden. Those items and a subjective evaluation by the interviewer are considered as BF.
Primary diagnosis: functional illness other than alcoholism, drug abuse or anti-social personality; schizophrenia was the most common diagnosis (63%).
Not mentioned
Herz et al (1976)1 9
Family Evaluation Form2 5 Past week
Gibbons et al (1984)1 1
Social Behaviour Objective measurement for each Assessment Schedule1 2 item: the severity of the patient’s Past month behaviour; subjective measurement: the family member’s emotional reaction to the behaviour. Items are related to patient functioning in social and household roles; and patient’s influence on family member’s health, on the children in the household and on other aspects of the household
All patients were diagnosed with 25% of the schizophrenia (for diagnostic supporters were method see1 1): 57% male, mean over 65 age = 40.2 years
Smith & Birchwood (1987)2 1
Family Distress Scale2 2 Patient’s impact in terms of (1) the extent of disturbance of family life, (2) inconveniences and (3) concern about oneself and the other family members
All patients were diagnosed with 70% parents, 17% schizophrenia (on the base of spouses, 13% other evidence of one or more `firstrelatives rank’ symptoms): 78% male, mean age 36.4 years
MacCarthy et al (1989)8
Interview to determine the objective burden and the 4-item scale (see Henderson et al)2 8 Past month
47% of the group suffered from schizophrenia, 27% from an affective psychosis, 13% from a neurotic disorder, 1 from early dementia and for 5 a definite diagnosis could not be given (based on development version of PSE-10). 57% male, mean age 48 years.
Objective burden on the family: problems with work experienced by family members, financial problems within the family, health and behaviour of each child and mental and physical health of the family member
31% parents, 56% spouses, 6 siblings and 1 friend. Elderly group, with 1/3 being of retirement age or over
Raj et al (1991)1 3 Interview Schedule for (1) Objective burden: financial Measuring the Burden5 burden, disturbance of family activities, recreation, interaction, and effect on the physical and mental health of the family members, (2) subjective burden: by a standard question (not specified)
All patients were diagnosed with Not mentioned schizophrenia (based on ICD-9) M:F ratio 3 : 2; 70% were between the ages of 20 and 35 years.
Gopinath & Chaturvedi (1992)7
All patients were diagnosed with 61% male; 48% schizophrenia (by Research above 35 years Diagnostic Criteria); 77% were younger than 35 years; 53% female
Scale for the Assessment of Family Distress2 9
Extent of `distress’ caused by activity-related, self-care-related, aggression-related, depressionrelated, and stressful positive and negative symptoms.
continued
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Table 1 Continued
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Study
Measuring instrument and period of time
Definition of BF
Patient sample
Relatives sample
Winefield & Harvey (1994)6
Non-specified (1) Objective burden: incursion structured interview2 0 on holidays, social relationships, family life and family relationships, household, interests and hobbies, sexual relationships and paid employment; (2) patient-related stress experienced by family members
All patients were diagnosed with schizophrenia (criteria not specified). 75% male, mean age 38 years
74% female; mean age 56.6 years; 69% parents, 17% siblings, 7% spouse and 4% child, and 2% another biological relative
Schene & van Wijngaarden (1994)1 5
Early version of the Involvement Evaluation Scale1 6 Past 4 weeks
Factor-analyses showed 4 burden factors: (1) tension, (2) worries, (3) stimulation and (4) keeping an eye on. A total burden score was also measured.
88% of patients diagnosed with schizophrenia, 5% with manicdepressive disorder and 5% with chronic psychosis (criteria not specified). 69% male; mean age 34 years
72% female; mean age 59.9 years; 75% parents, 13% sister/ brother, 7% partners
Xiong et al (1994)2 4
Non-specified scale Past 6 months
(1) Finances, (2) professional functioning, (3) emotional wellbeing of the healthy family members, (4) interpersonal family relationships, (5) social activities, (6) the total burden
All patients diagnosed with Not specified schizophrenia (DSM-III-R). 68% male; mean age at admission 31 years.
Cornwall & Scott Burden of Care (1996)1 7 Schedule1 8
Objective and subjective burden on an 18-item scale
46% psychotic or major affective 54% male disorder; 54% another diagnostic diagnosis.
Mueser et al (1996)1 0
A newly developed scale by authors
On a 5-point scale, the frequency and the discomfort for each symptom behaviour were measured. BF = frequency score multiplied by the discomfort score
56.2% diagnosis of schizophrenia or schizo-affective disorder; 43.8% diagnosis of bipolar disorder (chart-review)
64.6% female, 54.2% parent; mean age 52.4 years
Pariante & Carpiniello (1996)9
Assessment of Disability and Family Burden2 6 Past 6 to 8 weeks
The objective burden (whether or not a problem exists) and the subjective burden (the extent to which `distress’ is expressed by the family member) was studied in 17 problem areas.
Patients diagnosed with schizophrenia (DSM-III-R): 72% male, 28% female; mean age 35 years Patients with `mental retardation’ (they attended the `Italian Association for Assistance to Spastics’) 69% male, 31% female; mean age 13.8 years
Relatives of schizophrenic patients: 31% male and 69% female; mean age 52.1 years 59% parents, 19% husband or wife, 16% sister/brother and 6% other relatives. Relatives of mental retardation patients: mean age 44.5 years; 78% mother, 22% father
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difference in BF was observed between the two groups in their ratings of burden associated with positive or negative symptoms. The authors concluded that BF depends only weakly on psychiatric diagnosis and that therefore very little insight into BF can be gained from varying psychiatri c diagnoses. Behaviour symptoms Next to the effect of the diagnosis of the patient on BF, the influenc e of the characteristi cs of behaviour symptoms on BF has been examined. Gibbons and colleague s interviewed 183 people who lived with a family member with schizophren ia, in order to identify the most burdensome symptoms.1 1 They used the Social Behaviour Assessmen t Schedule,1 2 a standardized semistructured interview which investigates : (1) the patient’s behaviour in the last month (22 items); (2) the patient’s performanc e in social and domestic roles (12 items); and (3) the patient’s effect on the supporter’s health, on children in the household and on other househol d circumstance s (18 items). For each item there are two rating scales: objective (measurin g the severity of occurrence of the item) and subjective (a distress scale measuring the relatives’ emotional reaction to it). The inter-rater reliabilit y of the interview is known to be high. The results revealed that behaviour symptoms directed against family members, including rudeness and violence, together with behaviour symptoms resulting from an active psychosis , such as unpredictabil ity and bizarre ideas, caused severe distress. According to the authors, family members could more easily become resigned to chronic negative symptoms. Other studies, however, have reported contradictory results. 7 ,1 3 , 14 Raj and colleagues studied the BF experienced by 30 family members of patients with mainly positive symptoms (hallucinat ions, delusions and formal thought disorder) and 30 family members of patients with mainly negative symptoms (emotional withdrawal, alogia, apathy and anhedonia) .1 3 BF was measured with the Interview Schedule for Measuring Social Burden, a structured interview consisting of 24 items (objective burden). 5 The inter-rater reliabilit y and the content validit y have been reported to be high. Provision for assessing subjective burden was included by means of a standard question. BF was measured at inclusion and at follow-up (i.e. 6 months after inclusion) . At first interview, the family members of both groups experienced the same amount of burden (objective and subjective) . At follow-up, however, family members of patients with mainly negative symptoms reported significant ly more BF (objective and subjective) than did those of patients with mainly positive symptoms. A similar conclusion was drawn by Gopinath and Chaturvedi, who conducted a study of 62 family members of patients with schizophren ia, living with the respondents, with the aim of identifying the most burdensome symptoms. 7 The questions were administered with the Scale for Assessmen t for Family Distress,2 7 which lists various types of behaviour which cause distress to the
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family members. Relatives were asked to mention as many types of behaviour as possible, irrespectiv e of the amount of distress; and later to specify the amount of distress caused by each of the symptoms reported. The severity of distress was rated on a 5-point scale as well as in terms of percentage. Results revealed that the patient’s aggressiv e and threatening behaviour was not considered so stressful as was inactivity, lack of co-operation in househol d tasks, slowness and lack of personal hygiene. In their review article, Fadden et al too state that family members complain more about the patient’s depressed behaviour and hypochondri ac preoccupation s than about more visible symptoms, such as aggressivit y or socially inadequate behaviour .1 4 The finding of Raj et al1 3 that negative symptoms are generally considered more burdensome than positive symptoms, may be explained by the fact that family members do not attribute this negative behaviour to the patient’s condition, but consider it to be a type of behaviour which the patient can control. With respect to the quantity of behaviour symptoms, Schene and van Wijngaarden , in a study of 680 family members of psychotic patients, demonstrated that the more symptoms the patient shows (symptoms of agitation and apathy in particular) , the greater the BF will be.1 5 In this study the BF was assessed with the early version of the Involvemen t Evaluation questionnaire ,1 6 a questionnair e consisting of 88 multiple-choi ce questions, which was mailed to the relatives. Duration of illness In the previously cited study by Gibbons et al, the relationship between the duration of the patient’s disorder (schizophre nia) and the BF experienced by 193 family members was investigated.1 1 The results show that the time between the moment the BF was measured and the patient’s first contact with psychiatric assistance is inversely related to the (subjective) burden, i.e. the BF experienced tends to decline over time. Threequarters of patients with schizophreni a who had been ill for less than one year represented a moderate to great BF, compared to 46% of these patients who had been ill for more than 5 years. Similar results have been obtained by Cornwall and Scott, who studied the difference between BF at initial admission of patients with an acute psychiatric disorder and BF at follow-up 6 months later.1 7 BF was measured with the Burden of Care Schedule,1 8 which measures the objective and subjective burden on an 18item scale (items usually score 0 ± 4); higher scores are associated with greater burden. The results show a significan t reduction in the BF (objective and subjective) from the initial admission to 6 months later. The study by Schene and van Wijngaarden ,1 5 however, showed no effect of the duration of the disorder on BF. Treatment In a controlled study of 175 patients, Herz and colleague s examined whether BF varies with the period of treatment.1 9 For this purpose, three treatment groups were compared: (1) brief hospitalizatio n (mean, 11 days), followed by outpatient treatment; (2) brief hospitalizatio n (mean, 11 days) without subsequent outpatient treatment;
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and (3) standard hospitalizat ion for 60 days. The BF was measured at 3, 12 and 24 weeks. The instrument used is the Family Evaluation Form,2 5 consisting of a guided interview and an inventory of 455 items, grouped in 45 summary scales. Several items of the scale `Family difficultie s due to the patient’, reflect family burden. There were three summary measures of BF: (1) subjective distress in the family, due to the patient; (2) objective burden on the family, due to the patient; and (3) the interviewer’ s judgement of BF. The results do not reveal any significan t difference s in BF among the three treatment groups at 12 and 24 weeks, while at 3 weeks there were a few differences . The previously cited study by Cornwall and Scott 1 7 also examined the differenc e between the burden on family members of patients with an acute psychiatri c disorder who were hospitalized (n=17) and on family members of patients with the same disorder who were treated in the community (n=24). In this study too, no statistically significan t difference s were reported. Family relationshi p between the patient and the relative In the study mentioned previously , Gibbons and colleagues observed no effect of the family relationshi p (husband/wife/ parent/other) on BF (the distress score).1 1 Winefield and Harvey also examined the effect of the family relationshi p on the burden felt by 121 family members of schizophren ic patients. 6 They used a non-specifie d structured interview2 0 which the objective burden was measured with a checklist of seven possible problem areas. Caregiver s were also asked about the current sources of stress in their life, and the proportion of patient-related stress was calculated. The results differed from those obtained by Gibbons et al,1 1 since in this study parents and partners reported more stress than siblings and children . Variables related to an interventio n Smith and Birchwood investigated whether psycho-educa tion of family members reduces the burden on relatives living with a patient with schizophreni a.2 1 Information on the patient’s disorder was supplied either in 4-weekly group sessions led by professiona l caregivers, or in informatio n booklets sent 4-weekly by mail. Forty families were randomly assigne d to one of these groups. BF was measured at three moments in time: baseline, immediatel y after the education (post-education) and 6 months later (follow-up) . Smith and Birchwood employed the Family Distress Scale, (Pasamanick , 1967) a 22-item scale which measures the impact of having a schizophren ic relative in the family. 2 2 The reliabilit y of the instrument was proved to be high. The knowledge scores of both groups increase d significantl y from baseline to post-education and were maintained at 6 months follow-up. The relatives who had had group sessions acquired significantl y more informatio n than the relatives who had received booklets by post. There was no difference in the reported BF between baseline and post-education. However, there were significan t reductions in BF across both groups from the baseline to follow-up.
No correlation was found between the amount of knowledge acquired following education, and the reduction in the perceived burden, observed from baseline to follow-up. There is clear evidence that education reduced the burden experience d by family members, independent of the amount of knowledge acquired. Xiong and colleagues studied the effect of a family intervention on the burden on family members of 63 Chinese schizophreni c patients living at home.2 4 BF was examined with a non-specifie d scale which assesse d the effect of the patient’s illness on the the family’ s finances, work function, emotional well-being, interpersona l relationships in the family household, and social activities; an overall BF measure was also given. Family members were included at random either in a standard care group (n=29) or in a family intervention care group (n=34). Family intervention consisted of a monthly counsellin g session and a family meeting (group). These results also show a significan t reduction in BF (overall BF as well as finances, emotional well-being, interpersona l family relationship s and social activities) for the family members who followed the family intervention.
DISCUSSION This literature survey indicates that: (1) the patient’s psychiatric diagnosis has little effect on BF; (2) no consensus exists on the effect of the patient’s behaviour symptoms on BF; (3) there is no clear consensus on the effect of the duration of the patient’s illness on BF; (4) neither the length of hospitalizatio n nor the type of treatment affect BF; (5) no difference in the burden is found when it is compared between parents and partners, and the results of the studies on the difference between the burden on parents and partners on the one hand, and the patient’s children and siblings on the other, are not consistent; (6) family interventions (counselling , psychoeducation) appear to have a positive effect on BF. The studies discussed examine different variables which may affect BF. Given the current tendency toward deinstitutionali zation and the shift in care it implies, these studies are of great value, since they increase the understanding of the burden on the family, and more particularly of the factors which increase or reduce it. The understanding of BF can contribute toward the establishmen t of a care system which meets the requirements and needs of family members. At present, however, there is insufficien t agreement about the effect of the different variables on BF. This is partly due to three factors. First, the concept of the burden on family members is often defined and operationalized differently in the studies discussed.7 ,8,2 3 The second factor which may affect the consistency of the results is the differenc e in the time periods studied. Herz and colleagues 1 9 evaluated the week preceding the interview, whereas Xiong and colleagues2 4 asked about the BF experienced over a period of 6 months. Obviously , a lot of changes can
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occur over 6 months and answers will be less accurate after such a time interval. Finally, a third reason may be the fact that most studies examined only one or a few variables, and therefore variables other than the ones examined may differ between studies, and the fact that the variables that were not evaluated may have an effect on the burden experienced . To overcome these deficiencie s and gain more insight into the variables that determine the BF, it is important that in future studies on BF: (1) both the subjective and objective aspects of burden are included in the operationalization of BF; (2) the different variables discussed in the literature are examined in one exhaustive study; (3) the period examined is long enough to obtain a clear and correct view on the BF experienced , but not too long for family members to remember well what happened and to give the interviewer a reliable answer; (4) a standardized personal interview is used, since it obtains the most complete and valid information. Platt concluded from his evaluation of differen t rating scales for measuring BF that the semi-structur ed face-to-face interview is the best method for gathering informatio n about BF.4 Semistructured interviews have defined terms, fixed leading questions, and pre-coded ratings, and do allow the interviewer to ask for explanation if needed. Mail questionnaire s and telephone interviews are not recommended, since they produce a poor response rate and data of dubious reliabilit y and validity.4 An extensive study on BF is currently being conducted in the Universit y Psychiatri c Centre, Sint Jozef, Kortenberg,
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Belgium, which meets the criteria mentioned above, using the IBF (Interview voor de Belasting van de Familie, Interview for the Burden on the Family). This is a semistructured interview, developed by Kluiter and colleague s2 7 and adapted to the Belgian situation by our research group in 1997. Recent analyses have demonstrated that it is a reliable and valid instrument.2 3 This exhaustive study will offer a better understandin g of the factors that increase or reduce the burden experienced by family members. In that way we can contribute to the establishment of a care system which meets the requirement s and the needs of the family members as well.
KEY POINTS
· · · ·
More attention is being paid to the family burden of schizophreni c patients Family interventions such as counsellin g and psycho-educa tion appear to have a positive effect on the family burden There is little consensus on which factors determine the extent and/or pattern of family burden The lack of consensus is mainly caused by the varieties of definitions and operationaliza tions of family burden as well as by the different time periods addressed in the differen t studies
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