Review

Spinal Cord (2016) 54, 562–569; doi:10.1038/sc.2016.8; published online 23 February 2016

Caregiving services in spinal cord injury: a systematic review of the literature

E M Smith1,2,3, N Boucher4 and W C Miller2,3,5 and the SCIRE Research Team

  1. 1Faculty of Medicine, Graduate Program in Rehabilitation Sciences, University of British Columbia, Vancouver, British Columbia, Canada
  2. 2Rehabilitation Research Program, Vancouver Coastal Health Research Institute, Vancouver, British Columbia, Canada
  3. 3International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada
  4. 4School of Social Work, Laval University, Quebec, Quebec, Canada
  5. 5Department of Occupational Sciences and Occupational Therapy, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada

Correspondence: Dr WC Miller, Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of British Columbia, T325-2211 Wesbrook Mall, Vancouver, V6T 2B5 British Columbia, Canada. E-mail: bill.miller@ubc.ca

Received 14 July 2015; Revised 14 December 2015; Accepted 15 December 2015
Advance online publication 23 February 2016

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Abstract

Study design:

 

PRISMA guided systematic review.

Objectives:

 

To summarize and characterize the literature pertaining to the nature of and factors associated with caregiving services provided to individuals with spinal cord injury (SCI) and identify areas for interventional research to address the needs of care recipients.

Data Sources:

 

PUBMED/Medline, CINAHL, PsycINFO, EMBASE, Social Services Abstracts and Social Work Abstracts databases.

Methods:

 

Qualitative and quantitative peer-reviewed publications that were written in English were included if they described the nature of caregiving services in SCI, factors influencing the use of and access to caregiving services or described interventions to address caregiving needs of individuals with SCI.

Results:

 

Sixteen papers were selected. The level of evidence for included studies ranged from 2 (highest) to 5 (lowest). Eleven studies described the nature of caregiving services, demographics of caregivers and recipients and factors associated with requiring care. Five studies described caregiving interventions.

Conclusion:

 

Caregiving services in SCI are predominantly provided by informal caregivers who are female. Quality of care from informal caregivers matches or exceeds quality of formal care. Total hours of care are dependent on the injury level and severity and care needs of the individual. Caregiver training is an important theme and has positive preliminary results on the quality of care provided. Intervention-based research is limited; further research to increase independence in activities of daily living and instrumental activities of daily living would reduce the need for caregiving hours.