Poster 44: Health-Related Consequences of Caregiving Identified by Caregivers of Persons With a Spinal Cord Injury

Abstract

Objective: To describe the health-related consequences of caregiving in a sample of informal and formal caregivers of persons with a spinal cord injury (SCI). Design: This ongoing, federally-funded study employs a mixed-method approach to the collection, processing and analysis of data. Qualitative data comes from the transcribed in-depth interviews of study participants. Study participants also completed survey instruments measuring important outcomes, such as perceived stress, life satisfaction, and self-rated health/functioning. Setting: Community-based. Participants: Study participants included 39 informal caregivers and 20 formal caregivers. The former group included 23 unpaid family members and 16 independent contractors who were hired directly by the SCI care recipient. The latter group consisted of employees of home health agencies. Interventions: Not applicable. Main Outcome Measures: For this analysis quantitative measures included the following: Perceived Stress Scale (PSS), Satisfaction with Life Scale (SWLS), and a measure of health functioning (SF-12, v2). Qualitative outcomes consisted of narrative themes related to caregiver workload; stress; perceived impact of caregiving on health, and quality of life. Results: Informal caregivers reported higher mean PSS and SWLS scores and a lower mean SF-12 score than did formal caregivers. For both caregiver groups, descriptive statistics revealed moderately strong negative relationships between perceived stress and satisfaction with life and between stress and health functioning. Content analysis of coded transcripts produced a wide range of stressors linked to SCI caregiving. Informal caregivers most often cited the physical and emotional demands of caregiving. Formal caregivers most often cited poor wages and lack of health insurance benefits. A substantial number of participants in both caregiver groups cited health-related consequences of caregiving (fatigue, physical aches and pains, and deleterious effects on chronic conditions. Conclusions: This presentation triangulates quantitative data with narrative material to provide an understanding of the linkages between the demands of SCI caregiving and its health-related consequences for informal and formal caregivers.