title: Informal care providers for veterans with SCI: who are they and how are they doing?
abstract: Veterans with spinal cord injury (SCI) who received care at the Houston Department of Veterans Affairs Medical Center were interviewed about their use of formal and informal assistance to meet their daily physical needs. Informal caregivers were found to play an important role in the daily care of veterans with SCI, with 37% receiving some informal, unpaid assistance-with personal care. Primary informal caregivers were mostly women, had a mean age of 53, and provided an average of almost 12 hours of care a day. Nearly one-third of participants rated their primary caregiver as being only in fair or poor health, and one-fourth thought their caregiver was unlikely to be able to provide the same level of care 5 years from now. Of particular concern, more than half reported that they did not have anyone else willing and able to provide assistance if their primary family caregiver became permanently unable to care for them.
authors.affiliation: Department of Veterans Affairs (VA) Rehabilitation Research and Development Service, VA Medical Center, Houston, TX, USA. susanrw@bcm.tmc.edu
authors.forename: Susan
authors.initials: S
authors.lastname: Robinson-Whelen
authors.forename: Diana H
authors.initials: DH
authors.lastname: Rintala
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers; D003266:Continuity of Patient Care / Q000592:standards* / Q000639:trends; D005260:Female; D019538:Health Care Surveys; D006701:Home Nursing / Q000592:standards* / Q000639:trends; D006801:Humans; D015601:Injury Severity Score; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010264:Paraplegia / Q000628:therapy; D011782:Quadriplegia / Q000628:therapy; D011788:Quality of Life; D018570:Risk Assessment; D013119:Spinal Cord Injuries / Q000175:diagnosis / Q000628:therapy*; D011795:Surveys and Questionnaires; D014728:Veterans