Evaluation of burden in caregivers of patients suffering from schizophrenia.: Dimensions and domains

Since psychiatric institutions began discharging mentally ill patients into the community, families of patients suffering from schizophrenia were more and more involved in the therapeutic process. During the last decade psychoeducational programs were proposed to families, in order to help them having a better knowledge about the disease, more efficient coping strategies or less expressed emotional level. The adverse consequences of having at home a patient suffering from schizophrenia have been studied by a number of authors, and some of them published standardized questionnaires for evaluating "caregiver burden". Very few of these questionnaires were elaborated from the caregiver's point of view, only five of them have well documented psychometric properties and none of them has shown a good sensitivity to change. In this work we present an overview of the literature about caregiver burden questionnaires. Among the 30 questionnaires found in the literature, 16 only have been validated in caregivers of patients suffering from schizophrenia. The validation work is often partial: generally an evaluation of internal consistency. Only eight instruments have been validated with a factorial analysis, and in three of them a study of external validity study has been conducted. Sensitivity to change is described for none of the published questionnaires. These questionnaires may contain three great domains: a caregiver's evaluation patient's behavior or social functioning when considered as a burden, the consequences of care giving on caregiver's life, the subjective perception of care giving by the caregiver. Some instruments evaluate only one domain, others two or three of them. The best validated instruments are the Experience of Caregiving Inventory (Szmuckler et al.), the Involvement Evaluation Questionnaire (Schene et al.), the Questionnaire of Family Attitude and Burden (Morosini et al.). The Social Behavior Assessment Scale (Platt et al.) is the most detailed and complex instrument, and many questionnaires derived from it. No international consensus has been found about the dimensions of such an instrument, the evidence about the usefulness of these instruments for evaluating psychoeducational or therapeutic programs is weak, the lack of information about sensitivity to change is a major problem. In addition to the analysis of the literature, we performed 33 interviews of relatives of French patients suffering from schizophrenia. The results of the qualitative analysis of the verbatim are presented in detail: a global evaluation, some items about patient's behaviors mentioned as burdensome, items about relationships with patients, family and social relations, daily family routine, physical and mental health, satisfaction with psychiatric care, prospects and philosophy of life. As in the ECI and and the QFAB, some positive dimensions are found together with negative ones. A computer text data analysis has been further performed. The results show four great domains: (1) family routine and daily activities, (2) family and social relations, relationships with the patients, (3) satisfaction with psychiatric care, relationships with the patient, (4) a miscellaneous about the future for the patient as well as the caregiver, hope, fears... Items about mental health and psychological consequences of care giving are found in all dimensions. The comparison of experimental results and data from the literature shows the interest of a quality of life approach in caregivers. We further propose the development of a French language self-administered questionnaire for caregivers of patients suffering from schizophrenia. (C) 2004 Elsevier SAS. Tous droits reserves.