Hostname: page-component-586b7cd67f-t7fkt Total loading time: 0 Render date: 2024-11-26T09:54:11.277Z Has data issue: false hasContentIssue false
  • English
  • Français

Right people, right time? a qualitative study of service access experiences of adults with acquired brain injury following discharge from inpatient rehabilitation

Published online by Cambridge University Press:  28 October 2020

Michele Foster ,
Melissa Legg ,
Eloise Hummell ,
Letitia Burridge  and
Kirsty Laurie
Michele Foster*
Affiliation:
The Hopkins Centre Research for Rehabilitation and Resilience, Menzies Health Institute Queensland, Griffith University
Melissa Legg
Affiliation:
The Hopkins Centre Research for Rehabilitation and Resilience, Menzies Health Institute Queensland, Griffith University
Eloise Hummell
Affiliation:
The Hopkins Centre Research for Rehabilitation and Resilience, Menzies Health Institute Queensland, Griffith University
Letitia Burridge
Affiliation:
The Hopkins Centre Research for Rehabilitation and Resilience, Menzies Health Institute Queensland, Griffith University
Kirsty Laurie
Affiliation:
The Hopkins Centre Research for Rehabilitation and Resilience, Menzies Health Institute Queensland, Griffith University
*
*Corresponding author. Email: [email protected]
Get access

Abstract

Purpose:

The intention of this paper is to develop the personal concept of appropriate access. We report on the service access experiences and opportunities of adults with an acquired brain injury after leaving inpatient rehabilitation. The benefits of appropriate access underpin standards in early and long-term recovery, though users’ access needs are highly personal.

Methods:

The study used a qualitative design involving 16 semi-structured interviews with Australian adults with an acquired brain injury after discharge from inpatient brain rehabilitation. Data were thematically analysed.

Results:

Three main themes were derived from the analysis. Theme 1 shows that participants valued being steered to services that providers thought appropriate for them early after discharge from inpatient rehabilitation. Theme 2 highlights the tensions between timing and personal recovery and perceived needs. Theme 3 captures participants’ insights into the challenges of gaining access vis-a-vis what the system offers and the enablers of actualising appropriate access.

Conclusion:

The positive experiences of being directed to specialist services early after discharge suggest that continuity of care constitutes appropriateness of access for participants in this study. However, it is also clear that continuity should not displace flexibility in the timing of services, to accord with individuals’ perceived needs. This, in addition to enablement of access opportunities, through funding and transport, are important in maintaining a personalised approach.

Keywords

Brain injuriesaccess experienceappropriateness of accessrehabilitation
Type
Articles
Information
Brain Impairment , Volume 22 , Issue 1 , March 2021 , pp. 92 - 107
Copyright
© Australasian Society for the Study of Brain Impairment 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abrahamson, V., Jensen, J., Springett, K., & Sakel, M. (2017). Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: A qualitative study. Disability & Rehabilitation, 39(17), 1683–1694. https://doi.org/10.1080/09638288.2016.1211755 Google Scholar
Chesnut, R., Carney, N., Maynard, H., Mann, N., Patterson, P., & Helfand, M. (1999). Summary report: Evidence for the effectiveness of rehabilitation for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 14(2), 176–188. https://doi.org/10.1097/00001199-199904000-00007 Google Scholar
Chiou, K., Chiaravalloti, N., Wylie, G., DeLuca, J., & Genova, H. (2016). Awareness of subjective fatigue after moderate to severe traumatic brain injury. Journal of Head Trauma Rehabilitation, 31(3), E60–E68.Google Scholar
Collie, A., & Prang, K. (2013). Patterns of healthcare service utilisation following severe traumatic brain injury: An idiographic analysis of injury compensation claims data. Injury, 44(11), 1514–1520. https://doi.org/10.1016/j.injury.2013.03.006 Google Scholar
Conneeley, A. (2012). Transitions and brain injury: A qualitative study exploring the journey of people with traumatic brain injury. Brain Impairment, 13(1), 72–84. https://doi.org/10.1017/BrImp.2012.3 Google Scholar
Copley, A., McAllister, L., & Wilson, L. (2013). We finally learnt to demand: Consumers’ access to rehabilitation following traumatic brain injury. Brain Impairment, 14(3), 436–449. https://doi.org/10.1017/BrImp.2013.32 Google Scholar
Dams-O’Connor, K., Landau, A., Hoffman, J., & St De Lore, J. (2018). Patient perspectives on quality and access to healthcare after brain injury. Brain Injury, 32(4), 431–441. https://doi.org/10.1080/02699052.2018.1429024 Google Scholar
Daniels, N. (1982). Equity of access to health care: Some conceptual and ethical issues. Milbank Memorial Fund Quarterly: Health and Society, 60(1), 51–81. 10.2307/3349700 Google Scholar
Eliacin, J., Fortney, S., Rattray, N., & Kean, J. (2018). Access to health services for moderate to severe TBI in Indiana: Patient and caregiver perspectives. Brain Injury, 32(12), 1510–1517. https://doi.org/10.1080/02699052.2018.1499964 CrossRefGoogle ScholarPubMed
Forwood, M. (2018). Whither no-fault schemes in Australia: Have we closed the care and compensation gap? Alternative Law Journal, 43(3), 166–170.Google Scholar
Foster, M., Allen, S., & Fleming, J. (2015). Unmet health and rehabilitation needs of people with long-term neurological conditions in Queensland, Australia. Health and Social Care in the Community, 23(3), 292–303. https://doi.org/10.1111/hsc.12146 Google Scholar
Foster, M., Fleming, J., Tilse, C., & Rosenman, L. (2000). Referral to post-acute care following traumatic brain injury (TBI) in the Australian context. Brain Injury, 14(12), 1035–1045. https://doi.org/10.1080/02699050050203531 Google Scholar
Foster, M., Henman, P., Tilse, C., Fleming, J., Allen, S., & Harrington, R. (2016). ‘Reasonable and necessary’ care: The challenge of operationalising the NDIS policy principle in allocating disability care in Australia. Australian Journal of Social Issues, 51(1), 27–46. https://doi.org/10.1002/j.1839-4655.2016.tb00363.x Google Scholar
Foster, M., & Tilse, C. (2003). Referral to rehabilitation following traumatic brain injury: A model for understanding inequities in access. Social Science & Medicine, 56(10), 2201–2210. https://doi.org/10.1016/S0277-9536(02)00236-8 Google Scholar
Hall, A., Grohn, B., Nalder, E., Worrall, L., & Fleming, J. (2012). A mixed methods study of the experience of transition to the community of working-aged people with non-traumatic brain injury. Brain Impairment, 13(1), 85–98. https://doi.org/10.1017/BrImp.2012.7 Google Scholar
Hennink, M. M., Kaiser, B. N., & Marconi, V. C. (2017). Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research, . 27(4), 591–608.Google Scholar
Johnson, J. L., Adkins, D., & Chauvin, S. (2020). A review of the quality indicators of rigor in qualitative research American Journal of Pharmaceutical Education, 84(1), 7120. https://doi.org/10.5688/ajpe7120.Google Scholar
Jolliffe, L., Lannin, N., Cadilhac, D., & Hoffmann, T. (2018). Systematic review of clinical practice guidelines to identify recommendations for rehabilitation after stroke and other acquired brain injuries. BMJ Open, 8, e018791. https://doi.org/10.1136/bmjopen-2017-018791 Google Scholar
Jourdan, C., Bayen, E., Bosserelle, V., Azerad, S., Genet, F., Fermanian, C., … Members of the Steering Committee of the PariS-TBI Study. (2013). Referral to rehabilitation after severe traumatic brain injury: Results from the PariS-TBI Study. Neurorehabilitation and Neural Repair, 27(1), 35–44. https://doi.org/10.1177/1545968312440744 Google Scholar
Khan, F., Baguley, I., & Cameron, I. (2003). Rehabilitation after traumatic brain injury. Medical Journal of Australia, 178(6), 290–295. https://doi.org/10.5694/j.1326-5377.2003.tb05199.x Google Scholar
Knox, L., & Douglas, J. (2018). A scoping review of the nature and outcomes of extended rehabilitation programmes after very severe brain injury. Brain Injury, 32(8), 1000–1010. https://doi.org/10.1080/02699052.2018.1468924 Google Scholar
Kohl, A., Wylie, G., Genova, H., Hillary, F., & Deluca, J. (2009). The neural correlates of cognitive fatigue in traumatic brain injury using functional MRI. Brain Injury, 23(5), 420–432. https://doi.org/10.1080/02699050902788519 Google Scholar
Kumer, R., Kumar, A., & Singh, A. (2019). Psychosocial impact of brain injury: A review. Indian Journal of Neurosurgery, 8, 11–15.Google Scholar
Legg, M., Foster, M., Parekh, S., Geraghty, T., Nielsen, M., Jones, R., Kendall, E., & Fleming, J. (2019). Trajectories of Rehabilitation across Complex Environments (TRaCE): Design and baseline characteristics for a prospective cohort study on spinal cord injury and acquired brain injury. BMC Health Services, 19, 700. https://doi.org/10.1186/s12913-019-4564-5 Google Scholar
Levesque, J., Harris, M., & Russell, G. (2013). Patient-centred access to health care: Conceptualising access at the interface of health systems and populations. International Journal for Equity in Health 12(1), 18. http://www.equityhealthj.com/content/12/1/18 Google Scholar
Mellick, D., Gerhart, K., & Whiteneck, G. (2003). Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury. Brain Injury, 17(1), 55–71. https://doi.org/10.1080/0269905021000010159 Google Scholar
Mitsch, V., Curtin, M., & Badge, H. (2014). The provision of brain injury rehabilitation services for people living in rural and remote New South Wales, Australia. Brain Injury, 28(12), 1504–1513. https://doi.org/10.3109/02699052.2014.938120 CrossRefGoogle ScholarPubMed
Muenchberger, H., Kendall, E., & Collings, C. (2011). Beyond crisis care in brain injury rehabilitation in Australia: A conversation worth having. Journal of Primary Care & Community Health, 2(1), 60–64.Google Scholar
Nalder, E., Fleming, J., Cornwell, P., Foster, M., Ownsworth, T., Shields, C., & Haines, T. (2012). Recording sentinel events in the life course of individuals with acquired brain injury: A preliminary study. Brain Injury, 26(11), 1381–1396. https://doi.org/10.3109/02699052.2012.676225 Google Scholar
Nalder, E., Fleming, J., Cornwell, P., Shields, C., & Foster, M. (2013). Reflections on life: Experiences of individuals with brain injury during the transition from hospital to home. Brain Injury, 27(11), 1294–1303. https://doi.org/10.3109/02699052.2013.823560 CrossRefGoogle ScholarPubMed
Neumann, P., & Chambers, J. (2012). Medicare’s enduring struggle to define “reasonable and necessary” care. New England Journal of Medicine, 367(19), 1775–1777. https://doi.org/10.1056/NEJMp1208386 Google Scholar
O’Callaghan, A., 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. https://doi.org/10.3109/17549500903431774 Google Scholar
Ottenbacher, K., & Graham, J. (2007). The state-of-the-science: Access to postacute care rehabilitation services. A review. Archives of Physical Medicine & Rehabilitation, 88(11), 1513–1521. https://doi.org/10.1016/j.apmr.2007.06.761 Google Scholar
Pagan, E., Ownsworth, T., McDonald, S., Fleming, J., Honan, C., & Togher, L. (2015). A survey of multidisciplinary clinicians working in rehabilitation for people with traumatic brain injury. Brain Impairment, 16(3), 173–195. https://doi.org/10.1017/BrImp.2015.34 Google Scholar
Patton, M. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage Publications.Google Scholar
Penchansky, R., & Thomas, J. (1981). The concept of access: Definition and relationship to consumer satisfaction. Medical Care, 19(2), 127–140. https://www.jstor.org/stable/3764310 Google Scholar
Piccenna, L., Lannin, N., Gruen, R., Pattuwage, L., & Bragge, P. (2016). The experience of discharge for patients with an acquired brain injury from the inpatient to the community setting: A qualitative review. Brain Injury, 30(3), 241–251. https://doi.org/10.3109/02699052.2015.1113569 Google Scholar
Pickelsimer, E., Selassie, A., Sample, P., Heinemann, A., Gu, J., & Veldheer, L. (2007). Unmet service needs of persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 22(1), 1–3.CrossRefGoogle ScholarPubMed
Pope, C., Ziebland, S., & Mays, N. (2000). Qualitative research in health care. Analysing qualitative data. BMJ, 320, 114–116.Google Scholar
Ritchie, J., Spencer, L., & O’Connor, W. (2003). Carrying out qualitative analysis. In J. Ritchie & J. Lewis (Eds.), Qualitative Research Practice: A Guide for Social Scientists and Researchers (pp. 219–262), Sage, London.Google Scholar
Røe, C., Tverdal, C., Isager Howe, E., Tenovuo, O., Azouvi, P., & Andelic, N. (2019). Randomized Controlled Trials of rehabilitation services in the post-acute phase of moderate and severe traumatic brain injury (TBI) – A systematic review. Frontiers in Neurology, 10, 557. https://doi.org/10.3389/fneur.2019.00557 Google Scholar
Scott, J., & Bornstein, B. (2009). What’s fair in foul weather and fair? Distributive justice across different allocation contexts and goods. The Journal of Politics, 71(3), 831–846. https://doi.org/10.1017/S0022381609090744 Google Scholar
Simpson, G., Secheny, T., Lane-Brown, A., Strettles, B., Ferry, K., & Phillips, J. (2004). Post-acute brain injury rehabilitation for people with traumatic brain injury: A model description and evaluation of the Liverpool Hospital Transitional Living Program. Brain Impairment, 5(10), 67–80. https://doi.org/10.1375/brim.5.1.67.35401 Google Scholar
Smith, N., Mitton, C., Davidson, A., & Williams, I. (2014). A politics of priority setting: Ideas, interests and institutions in healthcare resource allocation. Public Policy and Administration, 29(4), 331–347. https://doi.org/10.1177/0952076714529141 Google Scholar
Stone, A., & Gumbert, J. (2008). Lifetime care and support The Lifetime Care and Support Scheme for catastrophically injured motor accident victims is now fully operational. Law Society Journal, 46(1), 42.Google Scholar
Stubberud, J., Edvardsen, E., Schanke, A.-K., Lerdal, A., Kjeverud, A., Schillinger, A., & Løvstad, M. (2019). Description of a multifaceted intervention programme for fatigue after acquired brain injury: A pilot study. Neuropsychological Rehabilitation, 29(6), 946–968. https://doi.org/10.1080/09602011.2017.1344132 Google Scholar
Ta’eed, G., Skilbeck, C., & Slatyer, M. (2013). Which factors determine who is referred for community rehabilitation following traumatic brain injury? Brain Impairment, 14(2), 222–234. https://doi.org/10.1017/BrImp.2013.21 Google Scholar
Toor, G., Harris, J., Escobar, M., Yoshida, K., Velikonja, D., Rizoli, S., … Colantonio, A. (2016). Long-term health service outcomes among women with traumatic brain injury. Archives of Physical Medicine & Rehabilitation, 97(2), S54–63. https://doi.org/10.1016/j.apmr.2015.02.010 Google Scholar
Turner-Stokes, L., Pick, A., Nair, A., Disler, P., & Wade, D. (2015). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database of Systematic Reviews, 2015(12), Article No.:CD004170. https://doi.org/10.1002/14651858.CD004170.pub3 Google Scholar
Turner, B., Ownsworth, T., Cornwell, P., & Fleming, J. (2009). Reengagement in meaningful occupations during the transition from hospital to home for people with acquired brain injury and their family caregivers. American Journal of Occupational Therapy, 63, 609–620. https://doi.org/10.5014/ajot.63.5.609 CrossRefGoogle ScholarPubMed
Supplementary material: File

Foster et al. Supplementary Materials

Foster et al. Supplementary Materials 1

Download Foster et al. Supplementary Materials(File)
File 14.3 KB
Supplementary material: File

Foster et al. Supplementary Materials

Foster et al. Supplementary Materials 2

Download Foster et al. Supplementary Materials(File)
File 62.5 KB