Clinicians’ versus caregivers’ ratings of burden in patients with schizophrenia and bipolar disorder

Abstract

Background:

Only a few studies have evaluated the similarities and differences between clinicians’ and caregivers’ rating of burden of caring for a person with chronic mental illness.

Aim:

To compare clinician-rated and caregiver-rated burden in a population of patients with either schizophrenia or bipolar disorder, using two different scales to measure caregiver burden.

Methodology:

Caregivers of patients with schizophrenia (n = 65) or bipolar disorder (n = 57) completed the Hindi version of the Involvement Evaluation Questionnaire (Hindi-IEQ) by themselves. Clinicians rated the burden on the Family Burden Interview Schedule (FBI) based on semi-structured interview with the same caregivers.

Results:

Both total objective and subjective burden on the FBI (clinician ratings) demonstrated significant positive correlations with the total Hindi-IEQ (caregiver ratings) scores. Most areas of burden on the FBI correlated positively with the tension and the worrying-urging II subscales, as well as the total Hindi-IEQ scores. According to clinicians, a significantly higher percentage of caregivers of patients with schizophrenia were experiencing a moderate to severe degree of subjective burden; objective burden in this group was also significantly higher in the domains of effect on the mental health of caregivers. Contrastingly, caregivers of patients with bipolar disorder judged burden to be higher in this group than schizophrenia.

Conclusions:

There were many areas of agreement as well as some significant discrepancies between clinicians’ and caregivers’ assessment of burden in this population of patients. This suggests that a comprehensive evaluation of burden should include assessments by both clinicians and caregivers of patients.

Keywords

Caregiver burden schizophrenia bipolar disorder clinicians

Introduction

Caregiver burden has been a key construct in the area of research on family caregiving. It has been usually defined as ‘the presence of problems, difficulties or adverse events which affect the life (lives) of the psychiatric patients’ significant others (e.g. members of the household and/or the family’ (Platt, 1985, pp. 383–384). Caregiver burden has proved to be a complex, multidimensional and multifaceted construct that is too broad, and hence, difficult to define or assess (Awad & Voruganti, 2008). One approach to make the concept more useful has been to break it down into different dimensions or components (Braithwaite, 1992). Traditionally, a distinction has often been made between the two constructs of objective and subjective burden (Awad & Voruganti, 2008). Objective burden is understood as the consequences of the patient’s illness on the family, which are quantifiable and measurable. It mainly focuses on the day-to-day practical problems encountered by the caregivers while providing care. Subjective burden refers to the caregiver’s own perception of the impact of caring for an ill relative. It is usually thought to be less tangible and more of a personal experience in the form of negative psychological impact. The distinction between objective and subjective burden has proved to be useful as both appear to be independent and uncorrelated dimensions of burden. In an influential study, Hoenig and Hamilton (1966) showed that a quarter of the families carrying a good deal of objective burden made no complaints of subjective burden, indicating a great degree of tolerance among caregivers and their readiness to care for patients despite the many difficulties faced. However, the categorization of burden into objective and subjective aspects has been criticized on the grounds that these are actually overlapping dimensions, which are difficult to operationalize and assess (Szmukler et al., 1996). Alternative conceptualizations of caregiver burden have laid more stress on the subjective nature of the phenomenon and have defined burden based on perceptions of the caregiver (Poulshock & Deimling, 1984). This conceptualization of burden as perceived impact of caring has also made a distinction between emotional impacts and impacts on resources such as time, health, family life and finances. The emotional impact of caring is often equated with subjective burden (Montgomery, Gonyea & Hooyman, 1985).

The differing concepts of burden suggest that a distinction needs to be made between burden rated by the clinician or the researcher and assessments of burden made by caregivers. This dichotomy is also reflected in the development of scales to measure burden. Although early burden assessment instruments were mainly interview schedules, there has been a proliferation of self-report questionnaires since the 1980s, and nowadays burden is more commonly assessed by scales based on ratings by caregivers (Deeken, Taylor, Mangan, Yabroff & Ingham, 2003; Whalen & Buchholz, 2009). However, the distinction between clinician and caregiver ratings of burden has been largely overlooked apart from a few studies among patients with schizophrenia and bipolar disorder (Macinnes, 1998; Mueser, Webb, Pfeiffer, Gladis & Levinson, 1996). These studies have indicated that although there were wide areas of agreement between ratings of burden by professionals and caregivers, there were also a number of significant differences.

These considerations prompted the current comparison of clinician-rated and caregiver-rated estimation of burden in a population of patients with either schizophrenia or bipolar disorder, using different scales to measure these two aspects of caregiver burden.

Materials and method

The study was conducted in the psychiatry outpatient clinic of a multi-specialty hospital catering to a large section of the population of north India. All the participants were recruited during the period January 2010 to December 2010.

Ethical approval and recruitment

The study protocol was approved by the research and ethics committees of the institute. All participants (patients and caregivers) were recruited after obtaining proper written informed consent.

Patients were recruited by purposive sampling from those attending the outpatient services for treatment. The inclusion criteria for patients included an ICD-10 (WHO, 1992) diagnosis of either schizophrenia or bipolar disorder, aged 18–65 years, and accompanied by a caregiver. Patients also had to be clinically stable (i.e. no exacerbations) and on stable treatment regimens for at least three months prior to assessment. The primary caregiver was defined as a person living with the patient for at least one year prior to assessment and intimately involved in the care of the patient; this would involve looking after the daily needs of the patient, supervising medications, bringing the patient to the hospital, staying with the patient during any hospitalization, and liaising with hospital staff.

Assessments

A cross-sectional study design was employed in which patients and caregivers were assessed only once at the time of intake into the study. Assessments of caregiver burden were carried out using two different scales.

Family Burden Interview Schedule (FBI)

The FBI, developed by Pai and Kapur (1981), is a clinician-rated scale that has been commonly used to rate burden, particularly in Indian studies (Chakrabarti, Raj, Kulhara, Avasthi & Verma, 1995; Chakrabarti & Gill, 2002; Raj, Kulhara & Avasthi, 1991). Although the scale distinguishes between objective and subjective burden, the primary focus is on objective burden; subjective burden is rated only on a single item. The scale consists of 24 items grouped under six areas: financial burden – six items; disruption of routine family activities – five items; disruption of family leisure – four items; disruption of family interaction – five items; effect on physical health of others – two items; effect on mental health of others – two items. Each item is rated on a scale of 0–2. Psychometric properties of the scale have been shown to be satisfactory (Chien & Norman, 2004; Martorell, Pereda, Salvador-Carulla, Ochoa & Ayuso-Mateos, 2007). The FBI was administered by a qualified psychiatrist.

Involvement Evaluation Questionnaire (IEQ) – Hindi version

In contrast to the FBI, the IEQ is a self-rated scale, which is based on the stress-appraisal-coping model of caregiver burden (van Wijngaarden et al., 2000). It relies on the caregiver’s perceptions to assess burden without distinguishing between its objective and subjective aspects. In an earlier study, the European version of the IEQ (IEQ-EU) was translated and adapted into Hindi (Grover et al., 2011). The psychometric properties of the Hindi version were found to be adequate. However, the factor structure was somewhat different from the original scale. The subscales and scoring of the Hindi-IEQ, which was used in this study, are somewhat different from the IEQ-EU (Grover et al., 2011). The four subscales of Hindi-IEQ include tension (10 items), worrying-urging I (10 items), worrying-urging II (six items) and supervision (three items). Each item is rated on a five-point Likert scale.

Global Assessment of Functioning Scale (GAF)

The GAF (Endicott, Spitzer, Fleiss & Cohen, 1976) was used to rate social functioning over the previous month.

Statistical analysis

Data were analysed using SPSS-14 (SPSS, Chicago, IL, USA). Pearson’s product moment or Spearman’s rank correlation were used to study the relationship between burden as per the clinician and caregiver ratings and various socio-demographic and clinical variables. In view of the multiple correlations used, partial Bonferroni’s correction was employed to lower the likelihood of type I errors. After partial Bonferroni’s correction, the significance was fixed at p < .01.

Results

The study included 122 patients recruited by purposive sampling: 65 with schizophrenia and 57 with bipolar affective disorder

Participant profiles

Details of the demographic and clinical profile of the patients and the demographic profile of the caregivers are shown in Table 1. Patients were for the most part educated men from middle-income urban families with chronic schizophrenia or bipolar disorder. Caregivers were their spouses (40.2%), parents (35.3%) or other relatives (22.2%), such as siblings, children and so on.

Table 1.

Demographic and clinical profile of participants.

	Patients (N = 122)	Caregivers (N = 122)
Age M (SD)	39.1 (13.9) years	47.1 (13.7) years
Males/females n	80 (65.6%)/42 (34.4%)	75 (61.5%)/47 (38.5%)
Married/not married n	69 (56.6%)/53 (43.4%)	104 (85.2%)/18 (14.8%)
Number of years of schooling M (SD)	11.2 (4.5)	12.3 (3.1)
Employed/unemployed n	79 (64.8%)/43 (35.2%)	73 (59.9%)/49 (40.1%)
Family income M (SD)	15,673 (13,221) Indian rupees/month
Nuclear/non-nuclear families n	69 (56.6%)/53 (43.4%)
Urban/rural residence n	84 (68.9%)/38 (31.1%)
Relationship of caregivers with patients
Parent n	43 (35.3%)
Spouse n	49 (40.2%)
Others n	30 (24.5%)
Time spent in caregiving M (SD)	–	6.1 (3.7) hours/day
Duration of caregiving M (SD)	–	10.0 (8.7) years
Age at onset M (SD)	27.9 (10.3) years
Duration of illness M (SD)	11.4 (9.0) years
GAF score M (SD)	62.7 (17.0)

Clinicians’ and caregivers’ ratings of burden

Table 2 shows the caregiver burden as rated by the clinicians using the FBI and caregivers using the Hindi-IEQ. The mean total objective burden score was 12.8 and the mean subjective burden score was 1. Most of the caregivers experienced moderate to severe burden as per the clinicians’ rating. The mean Hindi-IEQ score was 35.8, with the highest score being for the worrying-urging I domain, followed by the domains of worrying-urging II and tension, then the supervision domain.

Table 2.

Clinicians’ and caregivers’ ratings of burden.

Variable	M (SD) / Frequency (%)
Clinicians’ ratings – FBI
Financial burden	3.7 (92.6)
Disruption of routine family activities	3.9 (2.4)
Disruption of family leisure	2.4 (1.5)
Disruption of family interaction	1.9 (2.1)
Effect on physical health of others	0.4 (0.8)
Effect on mental health of others	0.5 (0.9)
Objective burden	12.8 (7.4)
Subjective burden	1.0 (0.8)
Subjective burden
No burden	35 (28.7)
Moderate burden	47 (38.5)
Severe burden	40 (32.8)
Global objective burden (clinician rating)	1.06 (0.8)
Global objective burden
No burden	36 (29.5%)
Moderate burden	42 (34.4%)
Severe burden	44 (36.1%)
Caregivers’ ratings – Hindi-IEQ
Tension	7. 3 (6.9)
Worrying-urging I	22.1 (11.8)
Worrying-urging II	9.0 (5.7)
Supervision	4.0 (7.3)
Total score	35.8 (23.2)

Association between clinicians’ and caregivers’ ratings of burden

Overall, there was considerable agreement between clinicians’ and caregivers’ ratings of burden (Table 3). Both total objective and subjective burden on the FBI as assessed by the clinician had a significant positive correlation with the total Hindi-IEQ scores. More or less all areas of burden on the FBI correlated positively with the tension subscale, the worrying-urging II subscale and the total Hindi-IEQ scores. There were very few significant correlations between the worrying-urging I and supervision subscales of Hindi-IEQ and the FBI ratings.

Table 3.

Association between clinicians’ and caregivers’ ratings of burden.

	Tension subscale	Worrying-urging I subscale	Worrying-urging II subscale	Supervision subscale	Total IEQ score
Total financial burden	0.293**		0.397**
Disruption of routine family activities			0.294**		0.237**
Disruption of family leisure	0.315**	0.293**	0.379**		0.391**
Disruption of family interaction^a	0.251**		0.373**	0.279**
Effect on physical health of others^a	0.297**		0.253**
Effect on mental health of others^a	0.267**		0.335***
Total objective burden	0.379**		0.516**		0.298**
Subjective burden					0.270**

Spearman rank correlation.

p < .01, *** p < .001.

Correlates of clinician-rated and caregiver-rated burden

Significant associations of the Hindi-IEQ and the FBI scores with certain demographic and clinical variables are shown in Table 4. As is evident from the table, significant associations between burden scores and age and educational level of the patient, his/her level of functioning, and the time spent in caregiving by the relative were common to both scales. On the other hand, family income and educational level of the caregiver demonstrated significant associations only with different aspects of the clinician-rated burden on the FBI.

Table 4.

Socio-demographic and clinical correlates (Pearson product moment correlation values) of FBI.

	Age of patient	Marital status of patient^a	Number of years of education of patient	Currently unemployed^a	Family income	Number of years of education of caregiver	Number of hours per day spent in caregiving	Employed caregiver	GAF score
Clinicians’ ratings – FBI
Total financial burden					−0.324**		0.324**
Disruption of routine family activities						−0.249**
Disruption of family leisure					−0.242*	−0.250**	0.291**	−0.291**
Disruption of family interaction^a				0.254**					−0.266**
Effect on physical health of others^a	−0.301**
Effect on mental health of others^a
Total objective burden					−0.311**
Subjective burden			−0.265**		−0.322**	−0.348***
Objective burden (clinician rating)			−0.248**			−0.218**
Caregivers’ ratings – Hindi-IEQ
Worrying-urging I			−0.196**				0.287**
Worrying-urging II	−0.239**						0.281**		−0.320***
Supervision	−0.242**
Total score		0.241**					0.367***

Spearman rank correlation.

p < .05, ** p < .01, *** p < .001.

Comparison of schizophrenia and bipolar disorder

Patients with bipolar disorder were significantly more likely to be married and employed, and had higher GAF scores (t = 4.94, p = .001). Caregivers of patients with bipolar disorder were spending significantly more time per day in caring for the patient than caregivers of those with schizophrenia.

On the FBI, a significantly higher percentage of caregivers of patients with schizophrenia experienced moderate to severe subjective burden (χ² = 12.39, p = .002). Additionally, caregivers of patients with schizophrenia experienced significantly higher burden in the domain of mental health of caregivers (Mann–Whitney U = −1351, p = .002). In contrast, the total Hindi-IEQ score was significantly higher for the caregivers of patients with bipolar disorder (t = 2.96, p = .004).

Discussion and conclusion

The principal finding of the current study was that there is a considerable level of agreement between the clinicians and caregivers in their assessment of burden in a population of patients with chronic schizophrenia or bipolar disorder. This was reflected in the significant association between objective and subjective burden scores on the FBI, representing the clinicians’ evaluation, and total scores on the Hindi-IEQ, which represented the caregivers’ perception of burden. Moreover, scores on both the tension and the worrying-urging II subscales of the Hindi-IEQ correlated positively with the FBI scores in the domains of financial burden, impact on family activities, leisure and interactions, and effect on physical and mental health of caregivers. The tension subscale of the IEQ is meant to assess the interpersonal relationships between patients and caregivers (Grover et al., 2011). If the relationship between the patient and the caregiver is strained because of the patient’s illness, this will naturally disrupt the family atmosphere and could have negative effects on the caregiver’s mental and physical health. Similarly, worrying reflects the caregiver’s concerns about the patient’s safety and future and urging represents the activational and motivational aspects of caregiving. Therefore, difficulties in these spheres are also likely to negatively impact the family atmosphere and the health of caregivers. This is particularly so since the worrying-urging II subscale of the Hindi-IEQ includes items to do with the caregiver, concerns about the patient’s current life situation and future, as well as the difficulties that they face in motivating the patient to perform basic routine and recreational activities (Grover et al., 2011). Finally, financial burden is often a major area of concern among low- to middle-income Indian families, such as those who participated in this study. The fact that the major share of the cost of care is usually borne by the family adds to the stresses and strains of caregiving (Grover, Avasthi, Chakrabarti, Bhansali & Kulhara, 2005). This readily explains the association between financial burden on the FBI and the tension, worry and urging scores of the Hindi-IEQ.

Paralleling this association between clinicians’ and caregivers’ ratings of burden was the overlap between correlates of burden of the two assessments. Both clinician- and caregiver-rated burden demonstrated associations with demographic factors such as age, marital status and educational level of the patient. However, family income, employment status and other caregiver demographics correlated only with clinician but not caregiver ratings of burden. This probably reflects the inconsistent associations between demographic variables and burden, which has been commonly observed in earlier studies of the subject (Chakrabarti, 2010). Time spent in caregiving turned out to be a consistent correlate of both clinicians’ and caregivers’ ratings of burden; such an association has been reported by a number of previous studies (Parabiaghi et al., 2007; Roick et al., 2006; Roick, Heider, Toumi & Angermeyer, 2007; Schene, van Wijngaarden & Koeter, 1998).

The results of this study also establish the concurrent and, to an extent, the predictive validity of the Hindi-IEQ. Taken together with the high reliability and internal consistency of the scale demonstrated earlier (Grover et al., 2011), these results indicate that the Hindi version of the IEQ is a useful scale to rate caregiver burden, much like the original version of the IEQ (van Wijngaarden et al., 2000).

However, despite the similarities between ratings of burden by clinicians and caregivers, there were important areas of differences as well. First, two of the subscales of the Hindi-IEQ, that is the supervision and worrying-urging I subscales, showed no associations with the FBI scores. Both in the current study and the earlier one (Grover et al., 2011), scores on this subscale were among the lowest, indicating that caregivers did not find supervising the patient to be a problem. This could be largely related to cultural factors such as close-knit Indian families with several members willing to share the burden of care. Moreover, Indian families consider it their moral responsibility to care for the patient, because of filial and familial obligations (Chakrabarti, 2010; Shankar & Rao, 2005). Similarly, the worrying-urging I subscale of the Hindi-IEQ also contains items predominantly related to supervision (Grover et al., 2011), which explains the lack of association with clinician-rated burden. Subjective burden scores on the FBI were associated with the total IEQ scores, but not with any of the domains of the Hindi-IEQ. Although this may be because of the inadequate assessment of subjective burden by the FBI, it also suggests that the caregivers’ perception of burden extends beyond the mere subjective distress of caring for a mentally ill person.

Very few studies have attempted to examine the differences in ratings of burden between clinicians and caregivers in chronic psychiatric illness. In one such study, Mueser et al. (1996) compared the burden of specific problem behaviours in schizophrenia and bipolar disorder, as rated by 48 caregivers and 39 mental health professionals. Professionals seemed to have a better idea of burden experienced by caregivers of patients with schizophrenia than of that experienced by caregivers of patients with bipolar disorder. A similar discrepancy between clinician- and caregiver-rated burden in schizophrenia and bipolar disorder was observed in the present study. In another study, Macinnes (1998) compared ratings of burden between mental health professionals and caregivers in 44 patients with schizophrenia. The results showed that certain dimensions of burden, related to violent behaviour, financial consequences, disrupted family atmosphere, concern over future, and guilt, shame and stigma, were rated similarly by both professionals and caregivers. However, there were differences in the appraisal of burden, both in the dimensions of the caregiver’s concerns about the client’s thoughts or behaviour in relation to the illness, and in the caregiver’s annoyance with the patient or with services. Thus, these findings are also similar to the similarities and differences between clinicians’ and caregivers’ rating of burden noted in the current study.

Taken together, the results of all these studies seem to indicate that although there are wide areas of agreement between clinicians’ and caregivers’ estimation of burden, there are some areas where they differ. This is expected given that burden is a multidimensional construct, and the dimension of clinician versus caregiver perceptions is likely to be an important one. This implies that for a comprehensive evaluation of burden, consideration needs to be given to the views of clinicians as well as caregivers (Awad & Voruganti, 2008).

However, these conclusions have to be tempered by the methodological limitations of the present study, including the relatively small and somewhat biased nature of the sample, and the absence of longitudinal assessments of burden. This paper also does not address the issue of whether adequate treatment and care can reduce this burden or what kind of interventions can reduce burden. Unless these limitations are overcome, it would be difficult to generalize these findings to other patient groups such as the less severely ill patients, or those residing in the community.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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