Background: There is a lack of literature regarding service needs of people with SCI living in the community. Better assessment of expressed and met and unmet needs would help in the development of effective service delivery. Objective: From a national SCI Community Survey in Canada, the aim was to identify the most critical service needs of people living in the community at least 1 year post discharge from rehabilitation and the support they received to meet their needs. Method: Data were collected mainly through a secure Web site and encompassed demographics, personal and household income, an SCI severity measure, and an SCI community needs measure containing information on 13 SCI-related needs. Results: A total of 1,549 persons with SCI (traumatic lesion, n = 1,137; nontraumatic lesion, n = 412) across Canada completed the survey. Most critical needs for community integration were expressed by a substantial proportion of survey participants, but significantly more expressed and met needs were reported by persons with a traumatic than a nontraumatic lesion. Personal and environmental characteristics influenced the probability of expressing and meeting needs (eg, severity of injury and household income). Help and support to meet expressed needs were received from government agencies, community organizations, and friends or family. Conclusion: Better assessment of expressed and met or unmet needs for services remains a challenge but will serve as a tool to optimize service delivery in the community. Environmental barriers to services, particularly the process of getting needs met and associated costs, remain an issue that requires a reconsideration of some aspects of access to services.
Sipski ML, Richards JS. Spinal cord injury rehabilitation: State of the science. Am J Phys Med Rehabil. 2006;85(4):310–342.
,
Spinal cord injury rehabilitation: State of the science
, Am J Phys Med Rehabil.
, vol. 85
(pg. 310
-342
) Wuermser LA, Ho CH, Chiodo AE, Priebe MM, Kirshblum SC, Scelza WM. Spinal cord injury medicine. 2. Acute care management of traumatic and nontraumatic injury. Arch Phys Med Rehabil. 2007;88(3 Suppl 1):S55–61.
,
Spinal cord injury medicine. 2. Acute care management of traumatic and nontraumatic injury
, Arch Phys Med Rehabil.
, vol. 88
(pg. S55
-61
) Kirshblum SC, Priebe MM, Ho CH, Scelza WM, Chiodo AE, Wuermser LA. Spinal cord injury medicine. 3. Rehabilitation phase after acute spinal cord injury. Arch Phys Med Rehabil. 2007;88(3 Suppl 1):S62–70.
,
Spinal cord injury medicine. 3. Rehabilitation phase after acute spinal cord injury
, Arch Phys Med Rehabil.
, vol. 88
(pg. S62
-70
) Santos A, Gurling J, Dvorak MF, et al. Modeling the patient journey from injury to community reintegration for persons with acute traumatic spinal cord injury in a Canadian centre. PloS One. 2013;8(8):e72552.
,
Modeling the patient journey from injury to community reintegration for persons with acute traumatic spinal cord injury in a Canadian centre
, PloS One.
, vol. 8
pg. e72552
Dijkers MP, Hart T, Tsaousides T, Whyte J, Zanca JM. Treatment taxonomy for rehabilitation: Past, present, and prospects. Arch Phys Med Rehabil.2014;95(1 Suppl):S6–16.
,
Treatment taxonomy for rehabilitation: Past, present, and prospects
, Arch Phys Med Rehabil.
, vol. 95
(pg. S6
-16
) Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clin Rehabil. 2001;15(6):600–606.
,
The need for a multidisciplinary outreach service for people with spinal cord injury living in the community
, Clin Rehabil.
, vol. 15
(pg. 600
-606
) Kennedy P, Lude P, Taylor N. Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples. Spinal Cord. 2006;44(2):95–105.
,
Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples
, Spinal Cord.
, vol. 44
(pg. 95
-105
) Kennedy P, Sherlock O, McClelland M, Short D, Royle J, Wilson C. A multi-centre study of the community needs of people with spinal cord injuries: The first 18 months. Spinal Cord. 2010;48(1):15–20.
,
A multi-centre study of the community needs of people with spinal cord injuries: The first 18 months
, Spinal Cord.
, vol. 48
(pg. 15
-20
) Murphy GC, McDonald L, McDonald S. Test-retest reliability of information about employment provided in surveys by people with spinal cord injuries. Psychol Rep. 1997;81(1):25–26.
,
Test-retest reliability of information about employment provided in surveys by people with spinal cord injuries
, Psychol Rep.
, vol. 81
(pg. 25
-26
) Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord. 1999;37(9):624–633.
,
Vocational outcome following spinal cord injury
, Spinal Cord.
, vol. 37
(pg. 624
-633
) Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord. 2000;38(1):51–55.
,
Return to work after spinal cord injury
, Spinal Cord.
, vol. 38
(pg. 51
-55
) Schonherr MC, Groothoff JW, Mulder GA, Eisma WH. Vocational perspectives after spinal cord injury. Clin Rehabil. 2005;19(2):200–208.
,
Eisma WH. Vocational perspectives after spinal cord injury
, Clin Rehabil.
, vol. 19
(pg. 200
-208
) Rick Hansen Man-in-Motion Foundation (RHMIMF). SCI Community Survey overall results. Ipsos Reid. 2004:56.
,
SCI Community Survey overall results
, Ipsos Reid.
, vol. 56
Rick Hansen Man-in-Motion Foundation (RHMIMF). SCI Forum report. Ipsos Reid. 2005:66.
,
SCI Forum report
, Ipsos Reid.
, vol. 66
Turner-Stokes L, McCrone P, Jackson DM, Siegert RJ. The Needs and Provision Complexity Scale: A multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open. 2013;3(2).
,
The Needs and Provision Complexity Scale: A multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability
, BMJ Open.
, vol. 3
Noreau L, Noonan V, Cobb J, Leblond J, Dumont F. Spinal Cord Injury Community Survey: A national, comprehensive study to portray the lives of Canadians with spinal cord injury. Top Spinal Cord Inj Rehabil. 2014;20(4):249–264.
,
Spinal Cord Injury Community Survey: A national, comprehensive study to portray the lives of Canadians with spinal cord injury
, Top Spinal Cord Inj Rehabil.
, vol. 20
(pg. 249
-264
) Beauregard L, Guindon A, Noreau L, Lefebvre H, Boucher N. Community needs of people living with spinal cord injury and their family. Top Spinal Cord Inj Rehabil. 2012;18(2):122–125.
,
Community needs of people living with spinal cord injury and their family
, Top Spinal Cord Inj Rehabil.
, vol. 18
(pg. 122
-125
) Siegert RJ, Jackson DM, Playford ED, Fleminger S, Turner-Stokes L. A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions. BMJ Open. 2014;4(2):e004231.
,
A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions
, BMJ Open.
, vol. 4
Jannings W, Pryor J. The experiences and needs of persons with spinal cord injury who can walk. Disabil Rehabil. 2012;34(21):1820–1826.
,
The experiences and needs of persons with spinal cord injury who can walk
, Disabil Rehabil.
, vol. 34
(pg. 1820
-1826
) Beatty PW, Hagglund KJ, Neri MT, Dhont KR, Clark MJ, Hilton SA. Access to health care services among people with chronic or disabling conditions: Patterns and predictors. Arch Phys Med Rehabil. 2003;84(10):1417–1425.
,
Access to health care services among people with chronic or disabling conditions: Patterns and predictors
, Arch Phys Med Rehabil.
, vol. 84
(pg. 1417
-1425
) Guilcher SJ, Munce SE, Couris CM, et al. Health care utilization in non-traumatic and traumatic spinal cord injury: A population-based study. Spinal Cord. 2010;48(1):45–50.
,
Health care utilization in non-traumatic and traumatic spinal cord injury: A population-based study
, Spinal Cord.
, vol. 48
(pg. 45
-50
) Zaida A, Burchardt T. Comparing incomes when needs differ: Equivalization for the extra costs of disability in the U.K. Rev Income Wealth. 2005;51(1):89–114.
,
Comparing incomes when needs differ: Equivalization for the extra costs of disability in the U.K
, Rev Income Wealth.
, vol. 51
(pg. 89
-114
) Cullinan J, Gannon B, Lyons S. Estimating the extra cost of living for people with disabilities. Health Econ. 2011;20(5):582–599.
,
Estimating the extra cost of living for people with disabilities
, Health Econ.
, vol. 20
(pg. 582
-599
) Wilkinson-Meyers L, Brown P, McNeill R, Patston P, Dylan S, Baker R. Estimating the additional cost of disability: Beyond budget standards. Soc Sci Med. 2010;71(10):1882–1889.
,
Estimating the additional cost of disability: Beyond budget standards
, Soc Sci Med.
, vol. 71
(pg. 1882
-1889
) Cao Y, Krause JS, Saunders LL, Bingham W. Household income and subjective well-being after spinal cord injury: A longitudinal study. Top Spinal Cord Inj Rehabil. 2014;20(1):40–47.
,
Household income and subjective well-being after spinal cord injury: A longitudinal study
, Top Spinal Cord Inj Rehabil.
, vol. 20
(pg. 40
-47
) van Loo MA, Post MWM, Bloemen JHA, van Asbeck FWA. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord. 2010;48(5):423–428.
,
Care needs of persons with long-term spinal cord injury living at home in the Netherlands
, Spinal Cord.
, vol. 48
(pg. 423
-428
) Lysack C, Komanecky M, Kabel A, Cross K, Neufeld S. Environmental factors and their role in community integration after spinal cord injury. Canadian J Occup Ther. 2007;74 Spec No.:243–254.
,
Environmental factors and their role in community integration after spinal cord injury
, Canadian J Occup Ther.
, vol. 74 Spec No
(pg. 243
-254
) McColl MA, Jarzynowska A, Shortt SED. Unmet health care needs of people with disabilities: Population level evidence. Disabil Soc. 2010;25(2):205–218.
,
Unmet health care needs of people with disabilities: Population level evidence
, Disabil Soc.
, vol. 25
(pg. 205
-218
) Jongbloed L, Backman C, Forwell SJ, Carpenter C. Employment after spinal cord injur y: The impact of government policies in Canada. Work. 2007;29(2):145–154.
,
Employment after spinal cord injur y: The impact of government policies in Canada
, Work.
, vol. 29
(pg. 145
-154
) Chun S, Lee Y. “I am just thankful”: The experience of gratitude following traumatic spinal cord injury. Disabil Rehabil. 2013;35(1):11–19.
,
“I am just thankful”: The experience of gratitude following traumatic spinal cord injury
, Disabil Rehabil.
, vol. 35
(pg. 11
-19
) Holicky R, Charlifue S. Ageing with spinal cord injury: The impact of spousal support. Disabil Rehabil. 1999;21(5–6):250–257.
,
Ageing with spinal cord injury: The impact of spousal support
, Disabil Rehabil.
, vol. 21
(pg. 250
-257
) Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord. 2010;48(1):73–79.
,
The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge
, Spinal Cord.
, vol. 48
(pg. 73
-79
) Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord. 2005;43(5):311–319.
,
Burden of support for partners of persons with spinal cord injuries
, Spinal Cord.
, vol. 43
(pg. 311
-319
) Schulz R, Czaja SJ, Lustig A, Zdaniuk B, Martire LM, Perdomo D. Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial. Rehabil Psychol. 2009;54(1):1–15.
,
Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial
, Rehabil Psychol.
, vol. 54
(pg. 1
-15
) Dickson A, Ward R, O’Brien G, Allan D, O’Carroll R. Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis. Psychol Health Med. 2011;16(4):463–474.
,
Difficulties adjusting to post-discharge life following a spinal cord injury: An interpretative phenomenological analysis
, Psychol Health Med.
, vol. 16
(pg. 463
-474
)
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