Caregiver burden: who the caregivers are, how they give care, and what bothers them.

The present research describes the association between objective and subjective caregiver burden experienced by families and friends of individuals with chronic mental illness. Although there has been a significant quantity of research conducted about burden and mental illness, the findings have been equivocal because of varying definitions of burden and varying sampling procedures. The present research utilizes a standardized interview instrument for caregivers. Caregivers were named by a stratified random sample of clients who have been certified as severely mentally disabled and have received publicly-funded community mental health services in the state of Ohio during the 1990 fiscal year. Data were collected by the first author and a research assistant during telephone interviews between August 1991 and May 1992. One hundred and eighty-nine caregivers were interviewed. Findings showed that the majority of caregivers are female, white, and aged 50 years or more. Parents comprise the largest group of caregivers and slightly more than one third of clients live with the caregiver. The relationship between caregiver and client is generally described as positive; however, the interviews were conducted during a period when the clients' symptomatology was more under control than previously in the relationship. Caregivers state that the clients need help much more often than they ask for it in all categories of possible help. Considering caregiver burden in relation to caregiver behaviors, time management is a somewhat frequent problem that is very troublesome to the caregiver. Considering client behaviors in relation to caregiver burden, embarrassing behaviors are most troublesome and occur with moderate frequency. The surprise element of these behaviors seems to be the most problematic.