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We Finally Learnt to Demand: Consumers’ Access to Rehabilitation Following Traumatic Brain Injury

Published online by Cambridge University Press:  05 December 2013

Anna Copley*
Affiliation:
University of Queensland, St. Lucia, Queensland, Australia
Lindy McAllister
Affiliation:
University of Sydney, New South Wales, Australia
Linda Wilson
Affiliation:
Charles Sturt University, New South Wales, Australia
*
Address for correspondence: Dr Anna Copley, Division of Speech Pathology, School of Health and Rehabilitation Sciences, The University of Queensland, St. Lucia, Queensland, 4072, Australia. E-mail: [email protected]
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Abstract

Clinical care guidelines exist internationally recommending the appropriate standards of care for adults following brain injury. These guidelines recommend a care pathway including acute, inpatient and outpatient rehabilitation and community-based care. However, if and how these guidelines are implemented is largely unknown. The aim of this study was to explore the recollected continuum of care experienced by 202 adults with moderate to severe traumatic brain injury (TBI) in Victoria, Australia. The experiences of participants in this study were investigated using a mixed methods research approach (surveys and in-depth interviews). The results indicated that only 20% of participants in this study recollected receiving care in line with recommendations made in clinical care guidelines. Reasons they identified for their problematic access to services included: a lack of information about the services available, the absence of an advocate and services being restricted by limited funding. The findings of this study indicate that while guidelines provide recommendations regarding standards of care and can serve as a benchmark to improve the quality of services, they do not ensure the equitable delivery of services. Clinicians using these guidelines need to be aware of the factors that restrict clients’ access to services and take these into account when planning the delivery of services.

Type
Articles
Copyright
Copyright © The Author(s), published by Cambridge University Press on behalf of Australian Academic Press Pty Ltd 2013 

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References

Accident Rehabilitation and Compensation Insurance Corporation, & National Health Committee. (1998). Traumatic brain injury rehabilitation guidelines. Medical Journal of Australia, 167, 293294.Google Scholar
Attitride-Stirling, J. (2001). Thematic networks: An analytic tool for qualitative research. Qualitative Research, 1 (3), 385405.CrossRefGoogle Scholar
Barnes, E.F., Frank, E.M., Montgomery, A., & Nichols, M. (2005). Factors prediciting rehabilitative service provision in adults with traumatic brain injury. Journal of Medical Speech-Language Pathology, 13 (1), 6984.Google Scholar
British Society of Rehabilitation Medicine, & Royal College of Physicians. (2003). Rehabilitation following acquired brain injury: National clinical guidelines. London: The Lavenham Press.Google Scholar
Brooks, D.N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1987). The effects of severe head injury on patient and relative within seven years of injury. Journal of Head Trauma Rehabilitation, 2, 113.CrossRefGoogle Scholar
Carr-Hill, R.A. (1994). Efficiency and equity implications of healthcare reforms. Social Science & Medicine, 39, 11891201.CrossRefGoogle Scholar
Department of Health. (2001). Measuring remoteness: Accessibility/Remoteness Index of Australia (ARIA). (revised edn). Occasional Papers: New Series Number 14. Adelaide: The University of Adelaide.Google Scholar
Fagen, C. (1996). Headway rural access program. Victoria: Headway.Google Scholar
Foster, M., Tilser, C., & Fleming, J. (2004). Referral to rehabilitation following traumatic brain injury: practitioners and the process of decision making. Social Science & Medicine, 59, 18671878.CrossRefGoogle ScholarPubMed
Frattali, C., Bayles, K., Beeson, P., Kennedy, M.R.T., Wambaugh, J., & Yorkston, K. (2003). Development of evidence-based practice guidelines: Committee update. Journal of Medical Speech-Language Pathology, 11 (3), ixxvii.Google Scholar
Grbich, C. (1999). Qualitative research design. In Minichello, A., Sullivan, K., Greenwood, K. & Axford, R. (Eds.), Handbook for research methods in health sciences. Australia: Pearsons Education Australia.Google Scholar
Harradine, P.G., Winstanley, J.B., Tate, R., Cameron, I.D., Baguley, I J., & Harris, R.D. (2004). Severe traumatic brain injury in New South Wales: Comparable outcomes for rural and urban residents. The Medical Journal of Australia, 181 (3), 130134.CrossRefGoogle ScholarPubMed
Harris, M.F., Harris, E., & Roland, M. (2004). Access to primary health care: Three challenges to equity. Australian Journal of Primary Health, 10, 2129.CrossRefGoogle Scholar
Health Department of Victoria. (1991). Summary of report of ‘head injury impact’ project. Health Department of Victoria, Community Services Victoria and Traffic Accident Commission.Google Scholar
Honey, K., & McCubbery, K. (1991). Grampians region acquired brain injury project. Victoria: Department of Human Services.Google Scholar
Humphreys, J., & Rolley, F. (1991). Health and health care in rural Australia. Armidale, Australia: University of New England, Department of Geography and Planning.Google Scholar
Johnstone, B., Nossaman, L.D., Schopp, L.H., Holmquist, L., & Rupright, S.J. (2002). Distribution of services and supports for people with traumatic brain injury in rural and urban Missouri. The Journal of Rural Health, 18 (1), 109116.CrossRefGoogle Scholar
Kelly, G. (1999). Home and community care: Applying for funding for social support and navigating the system. Victoria, Australia: Headway.Google Scholar
LeFebvre, H., Pelchat, D., Swaine, B., Gelinas, I., & Levert, M.J. (2005). The experiences of individuals with a traumatic brain injury, families, physicians and health professionals regarding care provided throughout the continuum. Brain Injury, 19 (8), 585597.CrossRefGoogle ScholarPubMed
Marsh, N.V., Kersel, D.A., Havill, J.H., & Sleigh, J.W. (2002). Caregiver burden during the year following severe traumatic brain injury. Journal of Clinical and Experimental Neuropsychology, 24 (4), 434447.CrossRefGoogle ScholarPubMed
Minichiello, V., Madison, J., Hays, T., Courtney, M., & St John, W. (1999). Qualitative interviews. In Minichiello, V., Sullivan, G., Greenwood, K. & Axford, R. (Eds.), Handbook for research methods in health sciences. Sydney: Addison Wesley Longman Australia.Google Scholar
Morse, J.M., & Field, P.A. (1995). Qualitative research methods health professionals (2nd ed.). Thousand Oaks, California: SAGE Publications.Google Scholar
Murphy, J. (2004). Care of the patient with traumatic brain injury: Urban versus rural challenges. Topics in Emergency Medicine, 26 (3), 231236.Google Scholar
Muus, K., Cogan, M., Offutt, S., & Medalen, R. (2006). Perceived barriers to accessing health and social services among individuals with traumatic brain injury. Journal of Head Trauma Rehabilitation, 21 (5), 431.CrossRefGoogle Scholar
Nabors, N., Seacat, J., & Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16 (12), 10391050.CrossRefGoogle ScholarPubMed
Newberry, L. (2001). Acquired brain injury in Gippsland. A new direction? A follow up study. Monash University.Google Scholar
New Zealand Guidelines Group. (2007). Traumatic brain injury: Diagnosis, acute mangagement and rehabilitation. Wellington: New Zealand Guidelines Group.Google Scholar
New Zealand Guidelines Group, & Accident Compensation Corporation. (2004). Traumatic brain injury rehabilitation in New Zealand: Current practice review. New Zealand: Medical Research Insitute of New Zealand.Google Scholar
O'Callaghan, A.M., McAllister, L., & Wilson, L. (2009). Sixteen years on has quality of care for rural and non-compensable traumatic brain injury clients improved? Australian Journal of Rural Health, 17 (3), 119123.CrossRefGoogle ScholarPubMed
O'Callaghan, A M., McAllister, L., & Wilson, L. (2010). Experiences of care reported by adults with traumatic brain injury. International Journal of Speech-Language Pathology, 12 (2), 107123.CrossRefGoogle ScholarPubMed
O'Callaghan, A.M., McAllister, L., & Wilson, L. (2011). Experiences of care: Perspectives of carers of adults with traumatic brain injury. International Journal of Speech-Language Pathology, 13 (3), 218227.CrossRefGoogle ScholarPubMed
O'Callaghan, A.M., McAllister, L., & Wilson, L. (2012a). Insight versus readiness: Factors affecting engagement in therapy from the presectives of adults with TBI and their significant others. Brain Injury, 1–2 (Early Online). doi:10.3109/02699052.2012.698788Google Scholar
O'Callaghan, A., McAllister, L., & Wilson, L. (2012b). Healthcare consumers. need for brain-injury services: The critical importance of timing in planning future services. Brain Impairment, 13 (3), 316332.CrossRefGoogle Scholar
Patton, M.Q. (2002). Qualitative research and evaluation methods (3rd ed.). Saint Paul, Minnesota: SAGE.Google Scholar
Sample, P.L., & Darragh, A.R. (1998). Perceptions of care access: The experience of rural and urban women following brain injury. Brain Injury, 12 (10), 855874.CrossRefGoogle Scholar
Sample, P.L., Tomter, H., & Johns, N. (2007). ‘The left hand does not know what the right hand is doing’: Rural and urban cultures of care for persons with traumatic brain injuries. Substance Use & Misuse, 42, 705–527.CrossRefGoogle ScholarPubMed
Schofield, M., & Jamieson, M. (1999). Sampling in quantitative research. In Minichiello, V., Sullivan, G., Greenwood, K. & Axford, R. (Eds.), Handbook for research methods in health sciences. Sydney: Addison Wesley Longman Australia.Google Scholar
Schwandt, T.A. (2000). Three epistemological stances for qualitative inquiry. In Denzin, Y.K. & Lincoln, M. (Eds.), Handbook of qualitative research (pp. 189213). Thousand Oaks, California: Sage Publications.Google Scholar
Traffic Accident Commission. (2003). Client information. Retrieved 17 July 2008 from: http://www.tac.vic.gov.au/jsp/content/NavigationController.do?areaID=26Google Scholar
Turner-Stokes, L., Disler, P.B., Nair, A., & Wade, D.T. (2005). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age (review). The Cochrane Collaboration, 4, 129.Google Scholar
Whitehead, M., & Dahlgren, G. (2007). Concepts and principles for tackling social inequities in health: Leveling up Part 1. Copenhagen, Demark: World Health Organisation.Google Scholar
Ylvisaker, M., & Feeney, T. (2000). Reflections on Dobermanns, poodles, and social rehabilitation for difficult-to-serve individuals with traumatic brain injury. Aphasiology, 14 (4), 407431.CrossRefGoogle Scholar
Youse, K.M., Le, K.N., Cannizzaro, M.Z., & Coelho, C.A. (2002). Traumatic brain injury: A primer for professionals. The ASHA Leader, June. Retrieved from: http://www.asha.org/Publications/leader/2002/020625/020625a.htmCrossRefGoogle Scholar