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

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.