CAREGIVING, PARTICIPATION, AND QUALITY OF LIFE OF CLOSEST NEXT OF KIN OF PERSONS LIVING WITH SPINAL CORD INJURY IN NORWAY

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. LAY ABSTRACT A spinal cord injury (SCI) often drastically disrupts the lives of both the individuals with SCI and the people surrounding them, such as family members. Caregiving for a loved one with SCI involves both physical and emotional investment. A survey was carried out of the caregivers of 73 persons living with SCI in Norway to assess their life situation. The study found that the majority of caregivers of persons living with SCI in Norway are doing well in most life areas. Three out of 4 caregivers reported good mental health and life satisfaction. All participants considered it important to care and most were happy to do so. Nevertheless, one-quarter reported high levels of strain, especially related to emotional adjustments. Most at risk for caregiver strain were participants of working age and those with secondary education. Caregiver strain may be reduced by strengthening the ability of the caregiver to cope with emotional challenges.