The Experience of Caregiving Inventory for first-episode psychosis caregivers: Validation of the Brazilian version
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, 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, Sepulveda et al., 2011). It was also adapted and validated in different cultures (Tarricone et al., 2006, 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.
Section snippets
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
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
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
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
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.
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