Family caregiving and mental illness: Predictors of distress and caregiver service priorities.

Abstract

This quantitative study provided a systematic examination of family caregiving and distress preceding the admission of a relative for inpatient psychiatric services. Fifty-four caregivers with a hospitalized relative were interviewed. Guided by the theoretical frameworks of stress and coping, ecological systems, and empowerment, the primary focus was to (1) identify specific predictors of caregiver distress near admission, (2) examine caregivers' pre-admission utilization of resources, and (3) explore caregivers' priorities for services. Based on Lazarus and Folkman's stress and coping theory, a model for predicting pre-admission caregiver distress was tested. The model hypothesized that caregiver appraisals of patient severity (i.e. illness outcome, incapacitation) and social support would be more predictive of caregiver distress than independent measures of patient severity (GAF rating, number of prior hospitalizations) and pre-admission caregiving. Rolland's illness characteristics of outcome (i.e., risk of fatal/life-threatening outcome) and incapacitation (i.e., social functioning), important for understanding family response to medical conditions, have not been tested with families and psychiatric disabilities. Measures included Tessler et al.'s Family Burden Interview Schedule, Winefield and Harvey's Multidimensional Social Support Scale, and Likert scale ratings of caregiver appraisals. Hierarchical regression analyses found caregivers' appraisal of illness outcome most predictive of caregiver distress. Forty-five percent appraised their relative at high risk of death, shortened life span, or serious injury due to the psychiatric condition. Worries focused on their relative's future and safety. The high levels of pre-admission stress reported by two-thirds of the sample decreased significantly following admission. Only one caregiver reported feeling blamed by a professional in the past year. Greatest dissatisfaction was with lack of practical caregiving advice. Eighty percent consulted public media, books, and brochures for information about mental illness. Caregivers wanted to be informed, involved, and expected professionals to work collaboratively with them. Perceiving their relative as highly vulnerable, they were not comfortable relinquishing decision-making power to professionals. Trauma from perceptions of life-threatening risk helps to explain intense family responses at admission, historically viewed as pathological. Collaborative relationships with professionals and participation in self-help groups are indicated. Caregivers' reliance on the media emphasized the importance of accurate public education about mental illness.