@article{e94f4c516b9343669b0407092cd7ae5f,
title = "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.",
keywords = "caregiver, caregiver burden, Norway, participation, quality of life, spinal cord injury",
author = "Annette Halvorsen and Kristine Pape and Marcel Post and Fin Biering-S{\o}rensen and Monica Engelsjord and Aslak Steinsbekk",
note = "Funding Information: The authors thank all the study participants for their time and effort in responding to the questionnaire, and all persons with SCI who were willing to ask their closest next of kin to participate and to provide contact information. We further thank the 3 SCI specialized centres, at Haukeland University Hospital, St Olavs University Hospital and Sunnaas Rehabilitation Hospital, for registration in NorSCIR, the steering committee of Norwegian SCI registry (NorSCIR) for providing access to the data, and Ann Louise Pet-tersen for providing the data delivery. Thanks are due to Albert Verhagen, Ingrid Riphagen, Wilma van de Veen, and Lars-Magnus Halvorsen for their contribution to the translations. The funding for the research project that this study was part of was provided by the Dam Foundation (grant number 2018/FO198620), the Liaison Committee between the Central Norway Regional Health Authority and the Norwegian University of Science and Technology (NTNU) (grant number 18/420) and the joint research committee between St Olavs Hospital HF and the Faculty of Medicine and Health Sciences at NTNU (grant number 2018/42795). Publisher Copyright: {\textcopyright} 2022 Foundation for Rehabilitation Information. All rights reserved.",
year = "2022",
doi = "10.2340/jrm.v54.2162",
language = "English",
volume = "54",
journal = "Journal of Rehabilitation Medicine",
issn = "1650-1977",
publisher = "Foundation of Rehabilitation Information",
}