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

Authors

  • Annette Halvorsen Clinic of Physical Medicine and Rehabilitation, Department of Spinal Cord Injuries; Department of Medical Quality Registries, St Olavs Hospital, Trondheim University Hospital; Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway
  • Kristine Pape Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway
  • Marcel Post Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, University Utrecht and De Hoogstraat Rehabilitation, Utrecht; University of Groningen, University Medical Centre Groningen, Centre for Rehabilitation, Groningen, The Netherlands
  • Fin Biering-Sørensen Section for Spinal Cord Injuries, Department for Brain and Spinal Cord Injuries, Copenhagen University Hospital, Rigshospitalet and Institute for Clinical Medicine, University of Copenhagen, Denmark
  • Monica Engelsjord User Representative, Oppdal, Norway
  • Aslak Steinsbekk Department of Public Health and Nursing, Norwegian University of Science and Technology, Trondheim, Norway

DOI:

https://doi.org/10.2340/jrm.v54.2162

Keywords:

spinal cord injury, caregiver, caregiver burden, participation, quality of life, 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.

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.

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Published

2022-04-07

How to Cite

Halvorsen, A., Pape, K., Post, M., Biering-Sørensen, F., Engelsjord, M., & Steinsbekk, A. (2022). Caregiving, Participation, and Quality of Life of Closest Next of Kin of Persons Living with Spinal Cord Injury in Norway. Journal of Rehabilitation Medicine, 54, jrm00278. https://doi.org/10.2340/jrm.v54.2162

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Original Report

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