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The Experience of Caregiving Inventory for first-episode psychosis caregivers: Validation of the Brazilian version

Schizophrenia Research, 2-3, 138, pages 274 - 279

Abstract

Family members of first-episode psychosis (FEP) patients are regarded as key components of the patient's evaluation, recovery and treatment. This paper aimed to investigate 75 FEP caregivers' appraisal, psychological morbidity and quality of life in the initial phase of treatment in a specialized FEP outpatient program in São Paulo, Brazil, and evaluate the validation of the Brazilian version of the Experience of Caregiving Inventory (ECI). Caregivers were also scored through Self Report Questionnaire-20 and Short Form-36. It was found that 29% of them might be a case for minor psychiatric disorder, that the worst domains of quality of life concerned emotional aspects, vitality and bodily pain, and that they were particularly affected by patients' negative symptoms, dependency and difficult behaviors. Additionally, internal consistency of ECI was very satisfactory (Cronbach's alpha = 0.95) with subscales ranging from 0.57 (stigma) to 0.94 (total negative score). The Brazilian version of the ECI is not only a facile, reliable and valid instrument to describe the experience of caring for a relative with serious mental illness. It offers mental health professionals an opportunity to access caregivers' global experience and their evaluation of a severe mental disease, as well as to predict their psychological suffering, which is harmful to both patient and caregiver.

Keywords: First-episode psychosis (FEP), Caregivers, Experience of Caregiving Inventory, SRQ-20, SF-36, Translation study, Validation study.

1. Introduction

Family members of first-episode psychosis (FEP) patients are regarded as fundamental components of the patient's evaluation, recovery and treatment. However, this is not an easy task. Family members usually face difficulties, feel distressed and hopelessness. Furthermore, insofar as this new situation may disrupt the family system, mental health professionals should recognize it and be able to help family members deal and understand the nature of the patients' symptoms. Studies conducted with FEP patients showed that caregivers' perceptions of the patients' behavior were more important than their actual behavior, symptoms or functional impairment ( Martens and Addington, 2001 ). To address all these concerns, FEP programs should develop models of family intervention to ameliorate caregivers' distress and to help them to cope with this role ( Bertolote and McGorry, 2005 ).

In the last ten years the Brazilian mental health system has embraced the worldwide emphasis on community treatment for severe mental disorders. As a consequence, patient's relatives became the main caregivers of these individuals, making a great effort to maintain the family unit, understand what has happened and help the affected member. A survey conducted in a FEP program in São Paulo, Brazil showed that their needs and understanding about the illness are similar to FEP family members from other countries. They reported that they know little about the disease, have difficulty identifying the psychotic symptoms and want to be knowledgeable about treating the patient. They stressed that talking about their feelings, such as guilt or anger, and struggling to understand the patient's behavior were their main needs ( Cabral and Chaves, 2005 ). A further survey evaluating multi-family intervention delivered by this same FEP program showed that caregivers found the intervention helpful regarding knowledge acquisition about the illness, but emphasized that the non-specific aspects of the intervention were very useful for them ( Cabral and Chaves, 2010 ).

The Experience of Caregiving Inventory (ECI) is an instrument developed into a “stress-coping” model, whose concept is based on the carer's appraise of the impact of the illness. It is a self-reported measure, providing a comprehensive description of the caregiving experience with a relative with serious mental illness. ECI presents a new attitude of caregiving, which rejects viewing burden as the only measure of their experience. The scale authors pointed that the term ‘burden’ is negative and damaging, refuting any positive or rewarding aspect of care. The inventory assesses both positive and negative aspects of caregiving, and its negative scale is considered the strongest predictor of carers' psychological well-being (Szmukler et al, 1996 and Addington et al, 2003). According to Joyce et al. (2000) , carers' appraise their situation not only according to the degree of demands or stressors on them, but also mediating environmental factors such as social support, family relationships and service inputs. ECI was used to assess carers in several clinical situations (McCleery et al, 2007, Grover et al, 2011, and Sepulveda et al, 2011). It was also adapted and validated in different cultures (Tarricone et al, 2006 and Lau and Pang, 2007). In addition, ECI is a good instrument to be used as an outcome measure to evaluate family interventions aimed to decrease carers' distress.

There are few studies investigating the experience of FEP caregiving in South American countries. We consider very important to increase the knowledge in this area for the Latin cultures and enlarge measures to assess caregivers distress and experience. This paper has the purpose to assess FEP caregivers' appraisal, psychological morbidity and quality of life in the initial phase of treatment and to evaluate the validation of the Brazilian version of ECI.

2. Methods

2.1. Setting

This study was conducted in the FEP Program of the Federal University of São Paulo (UNIFESP-EPM), in São Paulo, Brazil, an outpatient service offering a comprehensive treatment program. To be enrolled in the service, the patients should be between 15 and 35 years old, be experiencing their first episode of psychosis ( Keshavan and Schooler, 1992 ) and must not have received more than 3 months of adequate previous treatment. Most patients are referred from the psychiatry emergency service of a large public university hospital that primarily provides care to a low-income population. The data presented in this paper is part of a follow-up study which received approval from the local ethics committee (no 0738/08).

2.2. Sample

From January of 2009 to July of 2011, seventy-five patients and their caregivers were invited to participate in the study. To be considered a caregiver the individual (a) had to be over 18 years old, (b) should live with the patient in the same home or have at least one contact per week in order to help him directly, (c) should not be paid for the assistance and (d) agreed to participate in the study by signing the written consent form.

2.3. Translation

The translation of the Portuguese-Brazilian ECI version was authorized by the scale author and the process followed Guillemin's (1995) recommendations for this procedure. First, the scale was translated from English into Brazilian-Portuguese by four independent translators. In this phase, translations divergences between them were detected and discussed to reach a consensus. This edition was back-translated into English by two English native speakers, their versions being compared with the original English version to detect inaccuracies. An English fluent board comprising three psychiatrist and three psychologists evaluated each scale item and scored it as adequate or not in relation to semantic, content, criteria and conceptual similarity. This first version received 84% of approval by the judges. Minor discrepancies were revaluated by a new panel consisting of a psychiatrist, a psychologist and a social worker, all with sound experience in FEP, and a final version was accomplished taking into account their suggestions. We carried out a pilot study with five caregivers and no problem was detected in the performance of the final scale version.

2.4. Measures and procedure

Patients' and caregivers' socio-demographic characteristics were recorded using an ad hoc structured questionnaire. Patients were diagnosed according to DSM-IV criteria using the Structural Clinical Interview (SCID-I) ( First et al., 1995 ) and their symptoms were assessed with the Positive and Negative Syndrome Scale for Schizophrenia (PANSS) (Kay et al, 1987 and Vessoni, 1993). The scales ECI, SF-36 and SRQ-20 were designed to be self reported, however we decided to interview the caregivers because of the low educational level of our sample, in order to avoid misclassification bias. An individual trained by the first author, blind to patient's assessments performed the caregivers' evaluation orally using the following instruments:

2.4.1. Experience of Caregiving Inventory (ECI) — Portuguese-Brazilian version

Instrument developed into a “stress-coping” model, conceptualized based on carer's appraise of the impact of the illness. It is a scale designed to measure both negative and positive aspects of caregiving experience as perceived by a person responsible for the care of a person with a serious mental illness. Sixty-six items are comprised in ten subscales, eight negative (difficult behaviors, negative symptoms, stigma, problems with services, effects on family, need to provide backup, dependence and loss) and two positive (rewarding personal experiences and good aspects of relationship with the patient) ( Szmukler et al., 1996 ). The ECI negative scale is considered the strongest predictor of carer's psychological well-being ( Addington et al., 2003 ).

2.4.2. Short-Form-36 (SF-36)

Scale constructed to survey the health status in the Medical Outcomes Study, was designed for use in clinical practice and research, health policy evaluations and general population surveys. It is a generic outcome measure designed to examine a person's perceived health status and one of the most instruments used in health research, which includes one multi-item scale measuring each of the following eight health concepts: physical functioning; role limitations because of physical health problems; bodily pain; general health perceptions; Vitality (energy/fatigue); social functioning; role limitations because of emotional problems; and general mental health (Ware and Shelbourne, 1992 and Ciconelli et al, 1999). A recent study showed that the Brazilian version of SF-36 is a reliable and valid measure of health related to quality of life among the general population in Brazil ( LaGuardia et al., 2011 ).

2.4.3. Self-Report Questionnaire (SRQ-20)

Screening instrument was developed by the World Health Organization as a screening instrument and was designed to identify minor non-psychotic psychiatric disturbance in primary care settings and in the community. In this study we used the full version, which contains 24 items, 20 to screen for non-psychotic morbidity and 4 items intended to detect psychotic symptoms ( Harding et al., 1980 ). The validity coefficients of the Brazilian version were evaluated at primary care services and the recommended cut-off point was 7 for man and 8 for woman ( Mari and Williams, 1986 ).

2.5. Statistical analysis

Data were expressed as proportion or mean and standard deviation. Cronbach's alpha was used for reliability (internal consistency) of the Brazilian version of the ECI. The external validity level was evaluated by correlations between ECI scores × caregivers' psychological morbidity and quality of life measured by SRQ-20 and SF-36, respectively. Associations between variables were compared using Pearson's correlation and mean comparisons between subgroups were performed using Student's T-test when the variable had a normal distribution. For both ECI × SRQ-20 and ECI × SF-36 comparisons we chose to use non-parametric statistical tests, (Mann–Whitney U comparison between mean scores for ECI/SRQ-20 data and Spearman correlations for the ECI/SF-36 data) because it was not possible to establish a normal distribution of data. We also ran parametric tests that showed identical results. Descriptive and statistical tests (T-Test) were performed including possible confounders, in order to avoid spurious correlations. Statistical significance was defined as ρ < 0.05. The tests were performed using SPSS 15.0 version.

3. Results

3.1. Socio-demographic characteristics

The average caregiver was women, mothers, with a mean of 46 years old, married, employed, living with the patient and almost one third of them reached the SRQ-20 cut-off criteria for a minor psychiatric disorder. Regarding the patients, most were male, with a mean of 23.8 years old and 10 years of education, unemployed, single, living with family. Thirty percent of them were drug users, mainly cannabis, and 11% had a pattern of alcohol abuse. All meet DSM-IV criteria for psychosis disorder, 59% of whom met criteria for non-affective psychosis. FEP patients' first contact with a health service was on average 62.2 days (SD = 161.05) before their first appointment with our FEP-specialized service and the mean duration of untreated psychosis was 118 days (SD = 209.32). The details about caregivers' and patients' data are on Tables 1 and 2 .

Table 1 FEP caregivers' demographic and descriptive data.

Variable   Total (n = 75)
Gender (female) % (n) 76 (57)
Age (in years) M (SD) 46.5 (11.99)
Relationship to the patient    
 Mothers % (n) 58.7 (44)
 Spouses % (n) 12 (9)
 Fathers % (n) 12 (9)
 Sibling % (n) 10.7 (8)
Living with the patient % (n) 88 (66)
White % (n) 44 (33)
Years in school M (SD) 9.2 (4.45)
Married % (n) 54.7 (41)
Employed % (n) 64 (48)
Monthly family income (American dollars) M (SD) 1034.27 (784.31)
SRQ-20 positive % (n) 29.3 (22)

Table 2 FEP patients' demographic and descriptive data.

Variable   Total (n = 75)
Gender (male) % (n) 61.3 (46)
Age (in years) M (SD) 23.93 (6.82)
White % (n) 52 (39)
Years in school M (SD) 10.48 (3.33)
Single % (n) 82.7 (62)
With no children % (n) 100 (75)
Living alone % (n) 0 (0)
Currently studying % (n) 22.7 (17)
Unemployed % (n) 76 (57)
Drugs abuse/dependence % (n) 34.6 (26)
Alcohol abuse/dependence % (n) 11 (8)
Admitted to hospital % (n) 25.3 (19)
PANSS    
 Total score M (SD) 80.11 (16.93)
 Positive score M (SD) 18.6 (4.82)
 Negative score M (SD) 22.33 (8.2)
Diagnosis (DSM-IV criteria)    
 Non affective psychosis % (n) 58.7 (44)
 Bipolar disorder % (n) 27.5 (22)
 Schizophreniform disorder % (n) 26.2 (21)
 Schizophrenia % (n) 20 (16)
 Psychotic major depression % (n) 14.6 (11)

3.2. ECI translation

The internal consistency of the 66 items of the ECI Brazilian version was satisfactory (Cronbach's alpha = 0.95), with subscales ranging from 0.57 to 0.94, specifically: difficult behaviors 0.85; negative symptoms 0.84; stigma 0.57; problems with services 0.82; effects on family 0.81; need provide to backup 0.71; dependence 0.58; loss 0.65; positive personal experiences 0.77; good aspects of relationship with the patient 0.61; total negative score 0.94; and total positive score 0.81. These results are similar to subscale reliability coefficients across different countries (Szmukler et al, 1996, Tarricone et al, 2006, and Lau and Pang, 2007). However, we obtained lower coefficients for stigma (0.57), dependency (0.58) and good aspects of relationship (0.59) than the other studies. Scale face validity was evaluated asking the caregiver the following question, “Based on the questions we asked you before, what do you think we are analyzing?”. Two caregivers did not know, three answered vaguely, eight said that it was related to the patient and his/her diagnosis and the great majority answered that this study was about family issues related to the patient illness.

3.3. Caregiving experience

With regards to the caregiving experience as measured by the ECI, caregivers were more affected by negative symptoms, dependency and difficult behaviors, but less affected by stigma, effects on family and problems with health services. Our data, as well Addington's, suggest that in the initial phase of the disease there is an impact on the caregivers and that the ECI is a useful instrument to show us with domains that are more affected. The details about the ECI results and the adjusted score by percentage of impairment are presented in Table 3 . In the SRQ-20, nineteen female carers had a score of 8 or above and three male scored 7 or more. In other words, 29% of the caregivers might be a case for a minor psychiatric disorder (SRQ positive group) and these same caregivers showed higher scores than the remaining sample in the ECI subscales. It is worth noting that 68% answered that they had felt nervous, tense or worried, whereas 60% had felt sad recently. According to SF-36 scores, whereas the quality of life was more affected in both emotional aspects, scoring 53.77 (SD = 43.80), and vitality 62.66 (SD = 23.62), it was less affected in physical aspects, scoring 75.33 (SD = 35.71) and physical functioning 70.06 (SD = 25.89). The other domains scored: bodily pain 64.46 (26.47); general health perceptions 66.69 (19.66); social functioning 68.00 (27.35); and mental health 65.01 (SD = 23.71).

Table 3 ECI scores and adjusted values.

ECI subscales   Raw score Adjusted score
(By ECI Score) (By percentage of impairment)
Difficult behaviors Mean (SD) 15.01 (8.37) 46.91 (26.18)
Negative symptoms Mean (SD) 13.32 (6.75) 55.50 (28.16)
Stigma Mean (SD) 5.65 (4.32) 28.26 (21.59)
Problems with services Mean (SD) 10.31 (8.26) 32.20 (25.82)
Effects on family Mean (SD) 9.03 (7.07) 32.23 (25.26)
Need to provide back up Mean (SD) 9.24 (5.78) 38.50 (24.10)
Dependency Mean (SD) 9.67 (4.48) 48.33 (22.44)
Loss Mean (SD) 11.91 (5.73) 42.51 (20.47)
Positive personal experience Mean (SD) 16.16 (7.58) 50.50 (23.68)
Good aspects of relationship Mean (SD) 14.83 (5.04) 61.77 (21.01)
ECI total negative Mean (SD) 84.13 (39.56) 38.95 (18.31)
ECI total positive Mean (SD) 30.99 (11.29) 55.33 (20.15)

Table 4 compares the subscales mean ECI scores between the positive caregiver group and the negative group according to the SRQ-20. The differences between these groups regarding stigma, problems with health services, effects on family and negative total score were statistically significant (p < 0.05). Table 5 shows the correlations between ECI scores and SF-36 scores, results which corroborated the findings above. Moreover, caregivers' physical quality of life was significantly negatively correlated with most of the ECI subscales, showing the most negative caregiving experience is associated with caregivers' physical quality of life. The ECI subscale stigma was the item that had more significant correlations with SF-36 domains.

Table 4 Mean ECI scores between caregivers with positive and negative SRQ-20.

ECI sub-scales Positive SRQ-20 Negative SRQ-20 Total SRQ-20 p-value
n = 22 n = 53 n = 75
MEAN s.d. Mean s.d. Mean s.d.
Difficult behaviors 17.50 8.32 13.87 8.26 14.93 8.39 0.39
Negative symptoms 13.77 6.06 12.94 7.13 13.19 6.80 0.98
Stigma 7.36 4.58 5.06 4.10 5.73 4.34 0.022 lowastlowast
Problems with services 15.27 9.11 8.45 7.06 10.45 8.27 0.034 lowastlowast
Effects on family 12.59 7.61 7.38 6.23 8.91 7.03 0.023 lowastlowast
Need to provide back up 10.59 5.76 8.49 5.81 9.11 5.83 0.082 lowast
Dependency 11.32 4.46 8.94 4.32 9.64 4.50 0.18
Loss 14.59 6.44 10.85 5.10 11.95 5.74 0.082 lowast
Positive personal experience 15.41 6.99 16.32 7.81 16.05 7.53 0.31
Good aspects of relationship 15.77 4.87 14.30 5.11 14.73 5.05 0.62
ECI total negative 103.00 42.73 75.98 35.68 86.91 39.57 0.044 lowastlowast
ECI total positive 31.18 10.09 30.62 11.77 30.79 11.24 0.68

lowastlowast Correlation is significant at the 0.01 level.

lowast Correlation is significant at the 0,05 level.

p-value: Mann–Whitney non-parametric test.

Table 5 Spearman test (non-parametric) between ECI and SF-36.

ECI subscales Physical functioning Physical aspects Bodily pain General health Physical vitality Social functioning Emotional aspects Mental health
Difficult behaviors 0.01 − 0.31 lowastlowast − 0.20 − 0.10 − 0.03 − 0.13 − 0.15 0.00
Negative symptoms 0.08 − 0.12 0.08 − 0.03 0.06 − 0.12 0.02 0.10
Stigma − 0.24 lowast − 0.34 lowastlowast − 0.20 − 0.43 lowastlowast − 0.16 − 0.25 lowast − 0.20 − 0.20
Problems with services − 0.18 − 0.40 lowastlowast − 0.16 − 0.22 − 0.14 − 0.22 − 0.23 − 0.20
Effects on family − 0.22 − 0.42 lowastlowast − 0.19 − 0.17 − 0.15 − 0.19 − 0.29 lowast − 0.15
Need to provide back up − 0.05 − 0.22 − 0.30 lowastlowast − 0.19 − 0.14 − 0.17 − 0.26 lowast − 0.15
Dependency − 0.10 − 0.30 lowastlowast − 0.05 0.00 − 0.22 − 0.22 − 0.19 − 0.13
Loss − 0.06 − 0.24 lowast − 0.13 − 0.19 − 0.12 − 0.14 − 0.12 − 0.12
Positive personal experience 0.26 lowast 0.04 0.21 0.22 0.07 0.01 − 0.07 0.04
Good aspects of relationship − 0.04 − 0.08 − 0.08 0.05 0.00 0.00 − 0.08 − 0.07
ECI total negative − 0.14 − 0.42 lowastlowast − 0.14 − 0.21 − 0.13 − 0.27 lowast − 0.28 lowast − 0.14
ECI total positive 0.16 − 0.01 0.12 0.18 0.04 0.01 − 0.10 − 0.02

lowastlowast Correlation is significant at the 0.01 level.

lowast Correlation is significant at the 0.05 level.

p-value: Spearman non-parametric test.

Descriptive methods and statistical tests (T-Test) were performed including the following variables, in order to avoid spurious correlations: age, gender, marital status, monthly family incoming, employment and years in school. Our data indicated that worse formal education is associated with lower quality of life levels assessed by SF-36 in 5 of the 8 domains (physical functioning, physical aspects, bodily pain, general health and vitality) as well worse formal education is associated with worse experience assessed by IEC in 4 of 10 subscales (stigma, problems with health services, effects on family and total negative score). So “years in school” is presented as a possible confounder, but there was no regularity in the relation.

4. Discussion

4.1. The ECI around the world

This is a well-know instrument to assess carers' experience, which has been used in studies with chronic and recent-onset psychosis patients. Findings of such studies have showed that negative caregiver experiences were associated with their mental status, i.e., the more negative their appraisal of the situation, the higher their chance to develop a psychiatric condition. In order to evaluate whether those findings are comparable in our setting, a Brazilian version of ECI was validated in our service.

4.2. The process of validation of the instrument

The validation of an instrument from another culture involves a methodological procedure that is not only merely a translation. It requires a number of steps and its goal is to accomplish the original assumption, maintaining the same clinical and psychometric properties. This study showed that the ECI Brazilian version achieved good reliability, confirmed by alpha values of internal consistency comparable to those reported by the developers of the original English instrument. It is important to emphasize that our results showed lower reliability coefficients for stigma, dependency and good aspects of relationship than those in other-language versions of ECI, but in the data analysis of the subscales none of the items particularly contributed to the depressed value found. On the other hand, both Italian and Japanese versions have these same sub-scales among their worst results, which could indicate a weakness of these items when subjected to a translation process. We also consider that, in a FEP, stigma issues could be less harmful because there is no time for the family to feel the weight of prejudice.

This same reason could explain the low good aspects of relationship of Cronbach's alpha, given that the acute episode could prevent the family from experiencing these positive aspects of caregiving. With respect to the dependence alpha, we consider that almost all the patients in our sample were still living with the caregivers and unemployed, even before the crisis, so they were already dependent. Add to this the fact that it is culturally acceptable and reasonable that the sons and daughters remain at their parents' home for many years. It is possible that this kind of dependence is so expected in the Brazilian culture that it is not seem as a burden by the caregiver or a modifying of the previous situation. The external validity level was evaluated by correlations between ECI scores and caregivers' psychological morbidity, and quality of life measured by SRQ-20 and SF-36, respectively. The results were similar to those in findings from studies conducted in other countries, thereby showing a cross cultural consistency (Szmukler et al, 1996, Tarricone et al, 2006, and Lau and Pang, 2007). Our data, as well Addington's, suggests that in the initial phase of the disease there is an impact on the caregivers, even in different cultures. As shown in Table 6 , the Brazilian version subscale mean scores were presented side by side to Calgary study results in FEP patients ( Addington et al., 2003 ) than to the London's ( Szmukler et al., 1996 ), whose sample consisted of chronic patients with schizophrenia.

Table 6 ECI mean scores: carers of FEP patients x carers of patients with chronic schizophrenia.

ECI sub-scales FEP FEP Chronic
Brazilian version Addington et al. (2003) Szmukler et al. (1996)
Mean s.d. Mean s.d. Mean s.d.
Difficult behaviors 15.01 8.37 13.85 7.91 11.20 6.40
Negative symptoms 13.32 6.75 13.45 6.20 10.60 5.60
Stigma 5.65 4.32 6.32 4.75 5.50 4.40
Problems with services 10.31 8.26 11.24 5.86 13.30 7.30
Effects on family 9.03 7.07 9.36 5.86 10.40 6.3
Need to provide back up 9.24 5.78 10.31 5.45 8.90 5.7
Dependency 9.67 4.48 10.52 4.45 10.10 4.7
Loss 11.91 5.73 12.53 5.56 12.50 6.9
Positive personal experience 16.16 7.58 15.80 6.35 16.30 7.1
Good aspects of relationship 14.83 5.04 14.05 4.32 12.80 4.4
ECI total negative 84.13 39.56 87.58 33.64 82.5 n/a

n/a — not available.

4.3. The FEP caregivers' experience

We support the idea that our data, as well Addington's, suggests that in the initial phase of the disease there is an impact on the caregivers and that the ECI is a useful instrument to show us with domains that are more affected. FEP caregivers were affected in the initial phase of treatment, particularly in their emotional aspects and vitality. They were particularly affected by patients' negative symptoms and difficult behaviors. On the other hand, FEP caregivers showed a high level of positive personal experience, with the perception of having discovered strengths in themselves, becoming more understanding of others with problems and having meted helpful people. The caregivers related also good experiences of relationship with the patients, with the perception of having contributed to their wellbeing, felt useful in the relationship with them and that they were good company. Almost one-third of the family members reached SRQ-20 criteria for minor non-psychotic psychiatric disorder and most of them felt nervous, tense, worried and sad in the last 4 weeks. This specific group of caregivers had a worse caregiving experience in the fields of stigma, problems with health services and effects on family, and they had a closer follow-up to help them develop strategies to cope with their new condition. Our data also indicated that physical aspects of the caregivers are associated with a negative appraisal of their role as carers, but because this was a cross-sectional study, it was not possible to determine the effect direction ( Table 5 ). However, this finding is congruent with a supposed “somatizing trace” of Latin cultures, which may be linked to a cultural and linguistic expression ( Tofoli et al., 2011 ).

4.4. Limitations

The findings of this study need to be carefully assessed. In view of the sample size, the findings of validity and reliability of the translated version may not be fully acceptable. The Italian version of the ECI used a sample size of 95 subjects and the Chinese version used 129. We did not perform a formal test to determine the ideal sample size and we understand that it might be a methodological issue. On the other hand, other important Brazilian version scales were validated with modest sample size and they proved themselves useful in the psychiatric practice, as SF-36 (50 subjects × 36 items and 8 domains), Folkman e Lazarus's Ways of Coping Questionnaire (100 subjects × 66 items) Obsessive–Compulsive Inventory (15 subjects × 42 items) and Dissociative Experiences Scale (10 subjects × 28 items) (Savoia et al, 1996, Ciconelli et al, 1999, Fiszman et al, 2004, and Souza et al, 2008). We understand that the ECI is a useful instrument and that the validation process for Portuguese-Brazilian is a contribution for severe mental health services, their patients and caregivers in Brazil as well. For a small service, assisting poor people within the Brazilian mental health system, we felt as a great victory to reach this sample size.

Another limitation is that the SRQ-20 applied to caregivers is a screening test and there was not a psychiatric assessment and a formal diagnosis for them. These caregivers were followed with special attention through a multi-family group intervention offered by the service, but there was no specific psychiatric evaluation in the first moment. Only if the impairment persisted in the second evaluation, caregivers were referred for psychiatric evaluation and treatment. For this reason, the findings of psychiatric morbidity are limited and cannot be attributed only to the caregiving experience. In fact, we found an association, but other factors may interfere in this equation.

4.5. Clinical implications

Caregivers are subject to several problems in a relative's FEP process. Broadening the availability of measures to assess caregiver distress is essential for identification of caregivers who may be at-risk for problematic or maladaptative interactions with FEP patients, as such negative interactions may contribute to exacerbation of symptoms and poor patient outcome for the patient and the caregiver. The ECI is a useful instrument for identification of this specific caregivers and it has the advantage of assessing negative and positive aspects of caregiving. Brazilian psychiatry is poor in such instruments, so translate and validate the ECI for our language give to us an important weapon to identify the individuals who need help early in the treatment, and it provides substrate for tailored strategies to the most affected caregivers, working on the most affected domains.

The final version of Brazilian ECI is available and can be requested for free. Our interest is to share the present instrument with the community, in order to this paper provide a real benefit to FEP patients, caregivers and mental health services.

5. Conclusion

FEP caregivers are under stress in the beginning of the disease and should receive special attention in a FEP program, so as to reduce the ultimate severity of the illness. The Brazilian version of ECI is an easy, reliable and valid instrument to describe the experience of caring for a relative with serious mental illness. Moreover, it can detect early distress on these caregivers. It offers mental health professionals an opportunity not only to access caregivers' global experience and their evaluation of a severe mental disease, but also to predict their psychological suffering, which is harmful to both patient and caregiver. There is some support for specialized early intervention services in Brazil, but further trials would be desirable. To date, the study of this population in our country has been rudimentary and these data are just the preliminary results of a comprehensive research. We hope that our findings can help to stimulate more studies in this area, providing a modest but solid contribution in bringing the mental health service closer to the real needs of our patients and their relatives.

Role of funding source

This work was supported by a grant to FAPESP, a foundation that supports research in the São Paulo state, Brazil. Process number: 2008/10635-5. The funding source had no involvement in the decision to write the paper or in the decision to submit the paper for publication.

Contributors

Rita Jorge and Ana Cristina Chaves had contributed equally for the design of the study, writing the protocol, managing and overseeing all of the data collection, statistical analysis, and writing the first draft of the paper, although author Dr. Ana Cristina Chaves is the chief of the research and approved the final manuscript.

Conflict of interest

Rita Jorge and Ana Cristina Chaves report no financial relationships with commercial interests.

Acknowledgments

We would like to thank the staff of First-Episode Program of the UNIFESP.

References

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Footnotes

First Episode Psychosis Program, Psychiatry Department, Federal University of São Paulo (UNIFESP-EPM), Brazil

Rua Borges Lagoa, 570, 6° andar, CEP 04032-900, São Paulo, SP, Brazil

lowast Corresponding author at: Federal University of São Paulo, First Episode Psychosis Program, Rua Borges Lagoa, 570, 6° andar, CEP 04032-900, São Paulo, SP, Brazil. Tel.: + 55 11 5576 4160; fax: + 55 11 5571 7524.