Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory

Abstract

The aim of this study was to develop a practical, comprehensive, and valid self-report measure of the experience of caring for a relative with a serious mental illness. The notion of caregiver "burden' was rejected; instead caregiving was conceptualised within a 'stress-appraisal-coping' framework. A 66-item version of the Experience of Caregiving Inventory (ECI) was derived from analyses of responses from 626 caregivers, and then tested on an independent sample of 63 relatives of patients with schizophrenia recently in acute care. The extent to which the ECI complied with the stress-coping model was tested, especially the degree to which it, in association with coping, predicted psychological morbidity in carers. Ten sub-scales with good internal consistency resulted from our analyses, eight negative (difficult behaviours; negative symptoms; stigma; problems with services; effects on the family; the need to provide backup; dependency; loss) and two positive (rewarding personal experiences; good aspects of the relationship with the patient). The ECI, in conjunction with coping style, predicted a large proportion of the variance in the General Health Questionnaire (GHQ). We concluded that the ECI taps salient dimensions of caregiving distinct from, although linked with, coping and psychological morbidity. It has potential as a useful outcome measure for interventions aimed at promoting caregiver well-being.