Caregiving, Participation, and Quality of Life of Closest Next of Kin of Persons Living with Spinal Cord Injury in Norway

Abstract

Objectives: To investigate how next of kin of persons with spinal cord injury (SCI) experience various life areas in terms of caregiving, participation, and quality of life, and the impact of personal characteristics of next of kin and SCI characteristics. Design: Survey of next of kin linked to data on persons with SCI in the Norwegian SCI Registry. Participants: A total of 73 next of kin identified by persons with SCI. Methods: Outcome measures were caregiving (4 measures), participation (1 measure), and quality of life (2 measures). Results: Participants (73% partners, 73% female, mean age 56.4 years) gave various support to the person with SCI and considered it important to care and were happy to do so. Three-quarters of participants reported good mental health and life satisfaction, while one-quarter reported high levels of caregiver strain, especially related to emotional adjustments. Higher levels of caregiver strain were reported by participants of working age (< 67 years), and by those with middle level education. Conclusion: The majority of next of kin of persons living with SCI in Norway are doing well in most life areas. Caregiver strain may be reduced by strengthening the ability of next of kin to cope with emotional challenges.