Coping, Social Support, and Caregiver Well-Being With Families Living With SCI: A Mixed Methods Study

Abstract

Objectives: To explore coping, problem solving, social support, and well-being among family caregivers of adults with spinal cord injury (SCI). Methods: This was a mixed methods study (qualitative interviews and standardized surveys) with a diverse sample of 39 adults with SCI and their caregivers from four rehabilitation hospitals in the United States, including one Veterans Affairs (VA) hospital. Cluster analysis was used to explore whether distinct profiles of caregivers could be identified, and it was used in conjunction with qualitative data to explore patterns in well-being. Measures of well-being included leisure time satisfaction, social integration, anxiety, depression, physical health complaints, caregiver burden, and quality of life. Results: The importance of individual and extra-individual resources, namely coping and social support, emerged from early qualitative analyses and guided subsequent mixed methods examination of the data. A cluster analysis yielded three caregiver profiles: (1) effective problem solvers with moderate satisfaction with social support, (2) mixed problem solvers with stronger negative orientations and mixed satisfaction with social support, and (3) low endorsers overall. Profiles helped us explore patterns across our data set and efficiently identify differences in caregiver social support, coping, well-being, and unmet needs. Conclusion: Data echo the need for multimodal interventions aimed at skill development, respite options, and screening, support, information, and referral around mental health and burden. SCI care and rehabilitation programs should consider incorporating strategies for bolstering effective caregiver problem-solving skills, reducing negativity and ambivalence, and enhancing social support.