Using Cognitive Mapping to Understand Problems Experienced by Family Caregivers of Persons with Severe Physical Disabilities

Abstract

Individuals who provide ongoing care for family members who have a chronic disease or disability are likely to encounter a wide array of problems that can compromise their own health and their ability to function effectively in a caregiving role. Structured focus group meetings were conducted to elicit a comprehensive list of the problems that caregivers experienced during their first year of providing care to a person with a severe physical disability. A separate group of caregivers (N = 60) individually sorted problems into piles based on their similarity and assigned relative importance to each problem. The aggregated data were analyzed with multidimensional scaling and hierarchical cluster analysis. Results indicated that caregivers cognitively organize problems along three dimensions: I. Centeredness–caregiver versus patient-oriented; II. Relationship Demands–physical versus emotional; and III. Caregiver Burden–time versus emotional. Additionally, 6 clusters of substantively similar problems were identified and prioritized in terms of personal relevance: Basic Needs (lowest); Perceived Constraints; Caregiver Challenges; Patient Resentment; Patient Withdrawal; and Patient Intrapsychic Adjustment (highest). Further examination of the organization of problems identified by caregivers should provide important insights about the experience of caregivers and how more targeted interventions can be developed to address their specific needs.