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

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.

A controlled trial of a counselling intervention for caregivers of relatives with schizophrenia.

The effectiveness of short-term interventions to reduce caregiver 'burden' has not been clearly demonstrated. This study assessed the value of six weekly sessions of counselling for key relatives of patients with schizophrenia. The counselling had educational and problem-solving components and was conducted in the family home in the absence of the patient. A randomised controlled design was used. The subjects were the principal caregivers of patients consecutively admitted to acute psychiatric care. Assessments were made pre-treatment and at 3 and 6 months. Of 63 relatives recruited, 47 completed all phases of the study. Relatives in the intervention group reported that they were better able to understand the patient and had a more positive relationship. There were no differences between the intervention and control groups on negative aspects of caregiving or in coping style. Relatives who received the counselling reported slightly greater psychological morbidity at follow-up. However, they all said they would recommend it to others. We concluded that a brief, intensive counselling intervention was of modest benefit to caregivers. Some modifications are suggested.