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

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.

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.