Hours and costs of formal and informal care following Traumatic Brain Injury and Spinal Cord Injury sustained through Motor Vehicle Accidents: A Cross-sectional Study


  • Robert Gordon Australian Health Services Research Institute, University of Wollongong, Wollongong,
  • Grahame K. Simpson Australian Health Services Research Institute, University of Wollongong, Wollongong; Brain Injury Rehabilitation Research Group, Ingham Institute for Applied Medical Research; Faculty of Medicine and Health, University of Sydney; John Walsh Centre for Rehabilitation Research, Kolling Institute, Sydney, Australia
  • Josephine M. Paasila Australian Health Services Research Institute, University of Wollongong, Wollongong; Brain Injury Rehabilitation Research Group, Ingham Institute for Applied Medical Research




Traumatic Brain Injury, Spinal Cord Injury, Informal care, Health cost


Objectives: To explore the weekly utilization of formal and informal care, and to calculate and compare the costs associated with these types of care after traumatic brain injury or spinal cord injury sustained through a motor vehicle accident in Australia.
Design: Cross-sectional, quantitative design.
Subjects: A total of 81 people with traumatic brain injury and 30 people with spinal cord injury from 3 rehabilitation units in New South Wales, Australia.
Methods: Data were collected using questionnaires administered through semi-structured interviews, and analysed using a series of Kruskal–Wallis tests.
Results: Spinal cord injury (tetraplegia/ paraplegia) was significantly more expensive for both formal and informal care compared with traumatic brain injury. The costs of formal care were significantly greater for those in the traumatic brain injury group who had a more severe injury (post-traumatic amnesia > 90 days) compared with the other traumatic brain injury groups (post-traumatic amnesia 7–28 days, 29–90 days). The costs of informal care were significantly higher for both traumatic brain injury and spinal cord injury compared with the costs of formal care.
Conclusion: This study highlights the complementary role of formal and informal care in supporting people with traumatic brain injury or spinal cord injury, particularly highlighting the significant role of informal care, which needs to be more explicitly acknowledged in policy and planning processes.

This study explored the weekly utilization and annual costs of formal (paid support) and informal care (unpaid support) for 81 individuals with traumatic brain injury and 30 with spinal cord injury, sustained in motor vehicle accidents in Australia. Researchers conducted interviews with study participants, who were active clients of 3 separate rehabilitation units in New South Wales (NSW), Australia. Utilization of care differed across and within groups; however, the results showed significantly higher costs for spinal cord injury than for traumatic brain injury. Those with more severe traumatic brain injuries also had significantly higher costs. Finally, informal care was utilized significantly more than formal care services and contributed towards a greater annual “cost”. Overall, these results demonstrate the significant role that informal care has following traumatic brain injury or spinal cord injury. This study highlights the overall importance and value of informal care being recognized more in policy and planning processes.


Download data is not yet available.


Bureau of Infrastructure and Transport Research Economics. Road trauma Australia 2020 statistical summary; Canberra ACT; 2020.

Australian Automobile Association, Economic Connections. The cost of road trauma in Australia 2015. Hall ACT; 2017.

Gabbe BJ, Lyons RA, Fitzgerald MC, Judson R, Richardson J, Cameron PA. Reduced population burden of road transport–related major trauma after introduction of an inclusive trauma system. Ann Surg 2015; 261: 565–572. DOI: 10.1097/SLA.0000000000000522. DOI: https://doi.org/10.1097/SLA.0000000000000522

O’connor P. Prevalence of spinal cord injury in Australia. Spinal cord 2005; 43: 42–46. DOI: https://doi.org/10.1038/sj.sc.3101666

Ponsford J, Alway Y, Gould KR. Epidemiology and natural history of psychiatric disorders after TBI. J Neuropsychiatry Clin Neurosci 2018; 30: 262–270. DOI: https://doi.org/10.1176/appi.neuropsych.18040093

Sabaz M, Simpson GK, Walker AJ, Rogers JM, Gillis I, Strettles B. Prevalence, comorbidities, and correlates of challenging behavior among community-dwelling adults with severe traumatic brain injury: a multicenter study. J Head Trauma Rehabil 2014; 29: E19–E30. DOI: https://doi.org/10.1097/HTR.0b013e31828dc590

Lefebvre H, Cloutier G, Josée Levert M. Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Inj 2008; 22: 535–543. DOI: https://doi.org/10.1080/02699050802158243

Prang K-H, Ruseckaite R, Collie A. Healthcare and disability service utilization in the 5-year period following transport-related traumatic brain injury. Brain Inj 2012; 26: 1611–1620. DOI: https://doi.org/10.3109/02699052.2012.698790

Braaf S, Ameratunga S, Christie N, Teague W, Ponsford J, Cameron PA, et al. Care coordination experiences of people with traumatic brain injury and their family members in the 4-years after injury: a qualitative analysis. Brain Inj 2019; 33: 574–583. DOI: https://doi.org/10.1080/02699052.2019.1566835

McIntyre M, Ehrlich C, Kendall E. Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity. Disabil Rehabil 2020; 42: 754–762. DOI: https://doi.org/10.1080/09638288.2018.1508511

Arango-Lasprilla JC, Plaza SLO, Drew A, Romero JLP, Pizarro JAA, Francis K, et al. Family needs and psychosocial functioning of caregivers of individuals with spinal cord injury from Colombia, South America. Neuro Rehabilitation 2010; 27: 83–93. DOI: https://doi.org/10.3233/NRE-2010-0583

Hall KM, Karzmark P, Stevens M, Englander J, O’Hare P, Wright J. Family stressors in traumatic brain injury: a two-year follow-up. Arch Phys Med Rehabil 1994; 75: 876–884. DOI: https://doi.org/10.1016/0003-9993(94)90112-0

Jackson D, McCrone P, Turner-Stokes L. Costs of caring for adults with long-term neurological conditions. J Rehabil Med 2013; 45: 653–661. DOI: https://doi.org/10.2340/16501977-1178

Access Economics, Carers Australia. The economic value of informal care in 2010. Canberra ACT; 2010.

Turner-Stokes L, Nyein K, Halliwell D. The Northwick Park Care Needs Assessment (NPCNA): a directly costable outcome measure in rehabilitation. Clin Rehabil 1999; 13: 253–267. DOI: https://doi.org/10.1191/026921599677787870

Linacre JM, Heinemann AW, Wright BD, Granger CV, Hamilton BB. The structure and stability of the Functional Independence Measure. Arch Phys Med Rehabil 1994; 75: 127–132. DOI: https://doi.org/10.1016/0003-9993(94)90384-0

Hodgkinson, Veerabangsa A, Drane D, McCluskey A. Service utilization following traumatic brain injury. J Head Trauma Rehabil 2000; 15: 1208–1226. DOI: https://doi.org/10.1097/00001199-200012000-00003

Heinemann A, Sokal K, Garvin L, R B. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehabil 2002; 83: 1052–1059. DOI: https://doi.org/10.1053/apmr.2002.34283

Ponsford JL, Spitz G, McKenzie D. Using post-traumatic amnesia to predict outcome after traumatic brain injury. J Neurotrauma 2016; 33: 997–1004. DOI: https://doi.org/10.1089/neu.2015.4025

Ponsford JL, Spitz G, Cromarty F, Gifford D, Attwood D. Costs of care after traumatic brain injury. J Neurotrauma 2013; 30: 1498–1505. DOI: https://doi.org/10.1089/neu.2012.2843

Tate RL, Pfaff A, Baguley IJ, Marosszeky J, Gurka JA, Hodgkinson AE, et al. A multicentre, randomised trial examining the effect of test procedures measuring emergence from post-traumatic amnesia. J Neurol 2006; 77: 841–849. DOI: https://doi.org/10.1136/jnnp.2005.074989

Russell WR, Smith A. Post-traumatic amnesia in closed head injury. Arch Neurol 1961; 5: 4–17. DOI: https://doi.org/10.1001/archneur.1961.00450130006002

Teasdale GM. Head injury. J Neurol 1995; 58: 526. DOI: https://doi.org/10.1136/jnnp.58.5.526

Mace N, Rabins P. The 36-Hour Day. 5th ed. Baltimore: The Johns Hopkins Univeristy Press; 2011.

Norton L. Spinal cord injury, Australia 2007–08. 2010; Canberra: Australian Institute of Health and Welfare; 2010.

Pozzato I, Tate RL, Rosenkoetter U, Cameron ID. Epidemiology of hospitalised traumatic brain injury in the state of New South Wales, Australia: a population-based study. Aust J Public Health 2019; 43: 382–388. DOI: https://doi.org/10.1111/1753-6405.12878

Simpson GK, Sabaz M, Daher M, Gordon R, Strettles B. Challenging behaviours, co-morbidities, service utilisation and service access among community-dwelling adults with severe traumatic brain injury: a multicentre study. Brain Impair 2014; 15: 28–42. DOI: https://doi.org/10.1017/BrImp.2014.7

Access Economics. The economic cost of spinal cord injury and traumatic brain injury in Australia. Melbourne; 2009.

Chen A, Bushmeneva K, Zagorski B, Colantonio A, Parsons D, Wodchis WP. Direct cost associated with acquired brain injury in Ontario. BMC Neurol 2012; 12: 1–12. DOI: https://doi.org/10.1186/1471-2377-12-76

Van Loo M, Post M, Bloemen J, Van Asbeck F. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord 2010; 48: 423–428. DOI: https://doi.org/10.1038/sc.2009.142

Carpenter C, Forwell SJ, Jongbloed LE, Backman CL. Community participation after spinal cord injury. Arch Phys Med Rehabil 2007; 88: 427-433. DOI: https://doi.org/10.1016/j.apmr.2006.12.043

Nott M, Baguley I, Heriseanu R, Weber G, Middleton J, Meares S, et al. Effects of concomitant spinal cord injury and brain injury on medical and functional outcomes and community participation. Top Spinal Cord Inj Rehabil 2014; 20: 225–235. DOI: https://doi.org/10.1310/sci2003-225

DeVivo M, Chen Y, Mennemeyer S, Deutsch A. Costs of care following spinal cord injury. Top Spinal Cord Inj Rehabil 2011; 16: 1–9. DOI: https://doi.org/10.1310/sci1604-1

Tator C, Duncan E, Edmonds V, Lapczak L, Andrews D. Complications and costs of management of acute spinal cord injury. Spinal Cord 1993; 31: 700–714. DOI: https://doi.org/10.1038/sc.1993.112

Coleman WP, Geisler FH. Injury severity as primary predictor of outcome in acute spinal cord injury: retrospective results from a large multicenter clinical trial. Spine J 2004; 4: 373–378. DOI: https://doi.org/10.1016/j.spinee.2003.12.006

Smith E, Boucher N, Miller W. Caregiving services in spinal cord injury: a systematic review of the literature. Spinal cord 2016; 54: 562–569. DOI: https://doi.org/10.1038/sc.2016.8

Stillman MD, Frost KL, Smalley C, Bertocci G, Williams S. Health care utilization and barriers experienced by individuals with spinal cord injury. Arch Phys Med Rehabil 2014; 95: 1114–1126. DOI: https://doi.org/10.1016/j.apmr.2014.02.005

Willemse-van Son A, Ribbers G, Stam H, Van den Bos G. Is there equity in long-term healthcare utilization after traumatic brain injury? J Rehabil Med 2009: 65. DOI: https://doi.org/10.2340/16501977-0294

Collie A, Prang K-H. Patterns of healthcare service utilisation following severe traumatic brain injury: an idiographic analysis of injury compensation claims data. Injury 2013; 44: 1514–1520. DOI: https://doi.org/10.1016/j.injury.2013.03.006

Tate RL, Lane-Brown AT, Myles BM, Cameron ID. A longitudinal study of support needs after severe traumatic brain injury. Brain Inj 2020; 34: 991–1000. DOI: https://doi.org/10.1080/02699052.2020.1764101

Bayen E, Jourdan C, Ghout I, Darnoux E, Azerad S, Vallat-Azouvi C, et al. Objective and subjective burden of informal caregivers 4 years after a severe traumatic brain injury: results from the PariS-TBI study. J Head Trauma Rehabil 2016; 31: E59–E67. DOI: https://doi.org/10.1097/HTR.0000000000000079

Pullin LDH, McKenzie H. Spinal cord injury and long-term carers: Perceptions of formal and informal support. JARNA 2017; 20: 7–15.

Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Spinal cord 2017; 55: 964–978. DOI: https://doi.org/10.1038/sc.2017.56

Deloitte Access Economics. The value of informal care in 2020. Sydney; 2020.

Nosek. Healthcare apartheid and quality of life for people with disabilities. Qual Life Res 2010; 19: 609–610. DOI: https://doi.org/10.1007/s11136-010-9607-7

Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil 2017; 31: 45–60. DOI: https://doi.org/10.1177/0269215516639357

Doser K, Norup A. Caregiver burden in Danish family members of patients with severe brain injury: The chronic phase. Brain Inj 2016; 30: 334–342. DOI: https://doi.org/10.3109/02699052.2015.1114143

Mazlan M, Ghani SZSA, Tan K-F, Subramanian P. Life satisfaction and strain among informal caregivers of patients with traumatic brain injury in Malaysia. Disabil Rehabil 2016; 38: 2198–2205. DOI: https://doi.org/10.3109/09638288.2015.1123307

Pugh Jr M, Perrin PB, Arango-Lasprilla JC. Predicting caregiver burden over the first 4 months after acute traumatic brain injury in Latin America: a multi-country study. Brain Inj 2021; 35: 769–777. DOI: https://doi.org/10.1080/02699052.2021.1907861

Griffin JM, Friedemann-Sánchez G, Jensen AC, Taylor BC, Gravely A, Clothier B, et al. The invisible side of war: families caring for US service members with traumatic brain injuries and polytrauma. J Head Trauma Rehabil 2012; 27: 3–13. DOI: https://doi.org/10.1097/HTR.0b013e3182274260

Middleton JW, Simpson GK, De Wolf A, Quirk R, Descallar J, Cameron ID. Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. Arch Phys Med Rehabil 2014; 95: 1312–1319. DOI: https://doi.org/10.1016/j.apmr.2014.03.017

Weitzenkamp DA, Gerhart KA, Charlifue SW, Whiteneck GG, Savic G. Spouses of spinal cord injury survivors: the added impact of caregiving. Arch Phys Med Rehabil 1997; 78: 822–827. DOI: https://doi.org/10.1016/S0003-9993(97)90194-5



How to Cite

Gordon, R., Simpson, G. K., & Paasila, J. M. (2023). Hours and costs of formal and informal care following Traumatic Brain Injury and Spinal Cord Injury sustained through Motor Vehicle Accidents: A Cross-sectional Study. Journal of Rehabilitation Medicine, 55, jrm5368. https://doi.org/10.2340/jrm.v55.5368