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Healthcare Consumers' Need for Brain-injury Services: The Critical Importance of Timing in Planning Future Services

Published online by Cambridge University Press:  17 January 2013

Anna O'Callaghan ,
Lindy McAllister  and
Linda Wilson
Anna O'Callaghan*
Affiliation:
University of Queensland, St. Lucia, Queensland, Australia
Lindy McAllister
Affiliation:
Assoc. Prof. University of Sydney, Sydney, Australia
Linda Wilson
Affiliation:
Charles Sturt University, Albury, Australia
*
Address for correspondence: Dr Anna O'Callaghan, Division of Speech Pathology, School of Health & Rehabilitation Sciences, The University of Queensland, St. Lucia, Queensland 4072, Australia. E-mail: [email protected]
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Abstract

Developing an awareness of the preferences of healthcare consumers is essential in determining the ‘reality’ of service provision, in planning the provision of brain-injury services and in service evaluation. Consumers should be given the opportunity to express satisfaction or dissatisfaction with the services they receive, offering their perceptions of barriers to service access, which could be removed once known. This article presents narratives of the healthcare journeys of three adults with a moderate to severe brain injury. The experiences of these participants were elicited through in-depth interviews. The aim of this article is to convey how the needs and experiences of adults with brain injury change throughout time, affecting their ability to access care over time. Previous research by the authors of this paper identified five factors that affect consumers’ experiences of care: acceptance and readiness, support, advocacy, the right service at the right time and mismatched expectations. The fluidity and interaction of these factors through time is demonstrated in this article as facilitating and impeding access to services. The implications for clinicians in considering these factors when planning services for adults with moderate to severe brain injuries are explored.

Keywords

rehabilitationconsumers’ preferencesbest practicetiming
Type
Articles
Information
Brain Impairment , Volume 13 , Issue 3 , December 2012 , pp. 316 - 332
Copyright
Copyright © The Authors 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, 293–294.Google Scholar
Blight, R. (1991). Improving resource allocation and infrastructure. Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland.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
Brookshire, R.H. (2003). Introduction to neurogenic communication disorders. Missouri: Mosby.Google Scholar
Brown, M. (1991). Identifying the health needs of remote and rural communities. Paper presented at the 1st National Rural Health Conference, Toowoomba, Queensland.Google Scholar
Cicerone, K.D., Mott, T., Azulay, J.A., & Friel, J. (2004). Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 85, 1643–1650.Google ScholarPubMed
Commonwealth Department of Health and Aged Care. (2001). Measuring remoteness: Accessibility/remoteness index of Australia (ARIA). In Occasional Papers: New Series 14. October 2001. Canberra: DHAC.Google Scholar
Denzin, Y.K., & Lincoln, Y.S. (2005). The Sage handbook of qualitative research (3rd vol.). Thousand Oaks, California: Sage Publications.Google Scholar
Fleming, J.M., Strong, J., & Ashton, R. (1998). Cluster analysis of self awareness levels in adults with traumatic brain injury and relationship to outcome. Journal of Head Trauma Rehabilitation, 13 (5), 39–51.CrossRefGoogle ScholarPubMed
Foster, A.M., Armstrong, J., Buckley, A., Sherry, J., Young, T., Foliaki, S., . . . McPherson, K.M. (2012). Encouraging family engagement in the rehabilitation process: a rehabilitation provider's development of support strategies for family members of people with traumatic brain injury. Disability & Rehabilitation, 34 (22), 1855–1862.CrossRefGoogle ScholarPubMed
Gentleman, D. (2001). Rehabilitation after traumatic brain injury. Trauma, 3, 193–204.CrossRefGoogle Scholar
Goranson, T.E., Graves, R.E., Allison, D., & La Freniere, R. (2003). Community integration following multidisciplinary rehabilitation for traumatic brain injury. Brain Injury, 17, 759–774.CrossRefGoogle ScholarPubMed
Grbich, C. (1999). Qualitative research design. In Minichello, A., Sullivan, K., Greenwood, K. & Axford, R. (Eds.), Handbook for research methods in health sciences. China: Pearsons Education Australia.Google Scholar
Hickson, M. (2008). Research handbook for health care professionals. Oxford: Blackwell Publishing.Google Scholar
Hughes, P. (2003). Paradigms, methods and knowledge. In MacNaughton, G., Rolfe, S. & Siraj-Blatchford, J.. (Eds.), Doing early childhood research: International perspectives on theory and practice. Crows Nest, NSW: Allen & Unwin.Google Scholar
Humphreys, J., Mathews-Cowey, S., & Weinand, H.C. (1997). Factors in accessibility of general practice in rural Australia. Medical Journal of Australia, 166 (11), 577–580.CrossRefGoogle ScholarPubMed
Humphreys, J., & Rolley, F. (1993). Health care behaviour and service provision in rural Australia. Armidale, New South Wales: University of New England, Department of Geography and Planning.Google Scholar
Josselson, R. (2006). Narrative research and the challenge of accumulating knowledge. Narrative Inquiry, 16 (1), 3–10.CrossRefGoogle Scholar
Katz, D.I., & Alexander, M.P. (1994). Traumatic brain injury – predicting course of recovery and outcome for patients admitted to rehabilitation. Archives of Neurology, 51 (7), 661–670.CrossRefGoogle ScholarPubMed
Keleher, H. (1999). Rural public health matters. Australian and New Zealand Journal of Public Health, 23, 342–344.CrossRefGoogle ScholarPubMed
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), 585–597.CrossRefGoogle ScholarPubMed
Mackay, L.E., Bernstein, B.A., Chapman, P.E., Morgan, A.S., & Milazzo, L.S. (1992). Early intervention in severe head injury: long-term benefits of a formalized program. Archives of Physical Medicine and Rehabilitation, 73 (7), 635–641.Google ScholarPubMed
MacPhail, M. (1998). Accomodation support services for persons with acquired brain injury. Victoria: Ballarat Health Service.Google Scholar
Malec, J.F. (2001). Impact of comprehensive day treatment on societal participation for persons with acquired brain injury. Archives of Physical Medicine and Rehabilitation, 82, 885–895.CrossRefGoogle ScholarPubMed
McNaughton, H. (2004). Traumatic brain injury rehabilitation in New Zealand: Current practice review. Wellington, NZ: Medical Research Institute of New Zealand.Google Scholar
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, CA: SAGE Publications.Google Scholar
Morton, N., & Barker, L. (2010). The contribution of injury severity, executive and implicit functions to awareness of deficits after traumatic brain injury (TBI). Journal of the International Neuropsychological Society: JINS, 16 (6), 1089–1098.CrossRefGoogle ScholarPubMed
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
National Rural Health Policy Forum. (1999). Health horizons: A framework for improving the health of rural, regional and remote Australians 1999–2003 Retrieved from http://www.ruralhealth.org.au/nrhpublicGoogle Scholar
New Zealand Guidelines Group. (2006). Traumatic brain injury: Diagnosis, acute mangagement and rehabilitation. Wellington: Accident Compensation Corporation.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), 119–123.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), 107–123.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), 218–227.CrossRefGoogle ScholarPubMed
O'Callaghan, A.M., McAllister, L., & Wilson, L. (2012). Insight versus readiness: Factors affecting engagement in therapy from the perspectives of adults with TBI and their significant others. Brain Injury, 1–2(Early Online). doi: doi:10.3109/02699052.2012.698788CrossRefGoogle Scholar
Penchansky, R., & William Thomas, J. (1981). The concept of access: Definition and relationship to consumer satisfaction. Medical Care, XIX (2), 127–140.CrossRefGoogle Scholar
Rankin, N., Newell, S., Sanson-Fisher, R., & Girgus, A. (2000). Consumer participation in the development of psychosical clinical practice guidelines: Opinions of women with breast cancer. European Journal of Cancer Care, 9, 97–104.CrossRefGoogle Scholar
Sandelowski, M. (1991). Telling stories: Narrative approaches in qualitative research. Image: Journal of Nursing Scholarship, 23 (3), 161–166.Google ScholarPubMed
Schmidt, J., Fleming, J., Ownsworth, T., Lannin, N., & Khan, A. (2012). Feedback interventions for improving self-awareness after brain injury: A protocol for a pragmatic randomised controlled trial. Australian Occupational Therapy Journal, 59 (2), 138–146.CrossRefGoogle ScholarPubMed
Schwandt, T.A. (2000). Three epistemological stances for qualitative inquiry. In Denzin, Y.K. & Lincoln, M. (Eds.), Handbook of qualitative research (pp. 189–213). Thousand Oaks, CA: Sage Publications.Google Scholar
Seale, G.S., Caroselli, J.S., High, W.M., Becker, C.L., Neese, L.E., & Scheibel, R.S. (2002). Use of the community integration questionnaire to characterise changes in functioning for individuals with traumatic brain injury who participated in a post-acute rehabiliation programme. Brain Injury, 16, 955–967.CrossRefGoogle Scholar
Sherer, M., Bergloff, P., Levin, E., High, W.M., Oden, K.E., & Nick, T.G. (1998). Impaired awareness and employment outcome after taumatic brain injury. The Journal of Head Trauma Rehabilitation, 13 (5), 52–61.CrossRefGoogle Scholar
Stringer, K. (1999). Study into the accommodation needs for young people requiring nursing homes. Melbourne: Melbourne Citymission.Google Scholar
Tuel, S.M., Presty, S.K., Meythaler, J.M., Heinemann, A.W., & Katz, R.T. (1992). Functional improvement in severe head injury after readmission for rehabilitation. Brain Injury, 6 (4), 337–343.CrossRefGoogle ScholarPubMed
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, 1–29.Google Scholar
Youse, K.M., Le, K.N., Cannizzaro, M.Z., & Coelho, C.A. (2002). Traumatic brain injury: A primer for professionals. American Speech and Hearing Association, April., 4–7.CrossRefGoogle Scholar