Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-02T21:21:56.902Z Has data issue: false hasContentIssue false
  • English
  • Français

A Mixed Methods Study of the Experience of Transition to the Community of Working-Aged People with Non-Traumatic Brain Injury

Published online by Cambridge University Press:  14 June 2012

Alexandra Hall ,
Brooke Grohn ,
Emily Nalder ,
Linda Worrall  and
Jennifer Fleming
Alexandra Hall
Affiliation:
The University of Queensland, Australia
Brooke Grohn
Affiliation:
The University of Queensland, Australia
Emily Nalder
Affiliation:
The University of Queensland, Australia
Linda Worrall*
Affiliation:
The University of Queensland, Australia
Jennifer Fleming
Affiliation:
The University of Queensland, Australia Princess Alexandra Hospital, Queensland, Australia. Centre for Functioning and Health Research, Metro South Health Services District, Queensland, Australia
*
Address for correspondence: Professor Linda Worrall, Director, NHMRC CCRE in Aphasia Rehabilitation, Co-director, Communication Disability Centre, Postgraduate Coordinator, School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, QLD, 4072, Australia. E-mail: [email protected]
Get access

Abstract

Background and aims: The ‘transition’ phase from hospital to home following brain injury is well established as a critical period of adjustment for individuals and their families. There is, however, a lack of knowledge about the experience of transition following nontraumatic brain injury (e.g., stroke, aneurysm) for individuals of working age. The purpose of this study was to explore the transition experiences of individuals with nontraumatic brain injury using mixed methods approach.

Methods: Six individuals with nontraumatic brain injury were recruited from a larger study using maximum variation sampling criteria. Individuals participated in semistructured interviews at 6-months postdischarge and completed quantitative measures of psychosocial outcomes predischarge and at 6-months postdischarge. Results: Qualitative content analysis of interviews identified three themes: (1) changes in role performance, (2) support and services and (3) coping with life after brain injury. The transition experience was characterised by loss of valued roles including driving and work, identified as major barriers to regaining independence postdischarge. Informal support provided by family and friends were relied on, while formal supports were accessed infrequently. Life post-injury presented a number of challenges including adjusting to changes in physical and cognitive abilities and a fear of reinjury. Qualitative data were supported by an overall trend of improved functioning on the quantitative measures over the 6 months.

Conclusions: Key life circumstances of working age adults with nontraumatic brain injury influence the transition experience. Clinically, the findings support the need for individualised, structured transition services pre- and postdischarge for this group.

Keywords

Aneurysmstrokepsychosocial integrationqualitative
Type
Articles
Information
Brain Impairment , Volume 13 , Issue 1: Transition to Community Living after Acquired Brain Injury , July 2012 , pp. 85 - 98
Copyright
Copyright © The Authors 2012

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

Australian Institute of Health and Welfare. (2006). Australia's Health 2006. Retrieved from, http://www.strokefoundation.com.au/facts-figures-and-stats—ftnlink1_1Google Scholar
Bhogal, S.K., Teasell, R.W., Foley, N.C., & Speechley, M.R. (2003). Community reintegration after stroke. Topics in Stroke Rehabilitation, 10 (2), 107–129.Google Scholar
Burton, C.R. (2000). Living with stroke: A phenomenological study. Journal of Advanced Nursing, 32 (2), 301–309.CrossRefGoogle ScholarPubMed
Cameron, J.I., & Gignac, M.A. (2007). ‘Timing it right’: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Education and Counselling, 70 (3), 305–14.Google Scholar
Corr, S., & Wilmer, S. (2003). Returning to work after a stroke: An important but neglected area. British Journal of Occupational Therapy, 66 (5), 186–192.Google Scholar
Creswell, J.W., & Plano Clarke, V.L. (2007). Designing and conducting mixed methods research. Thousand Oaks, CA: Sage Publications.Google Scholar
Dolan, P., & Roberts, J. (2002). Modelling valuations for EQ-5D health states: An alternative model using differences in valuations. Medical Care, 40, 442–446.CrossRefGoogle ScholarPubMed
Ellis-Hill, C., Robison, J., Wiles, R., McPherson, K., Hyndman, D., & Ashburn, A. (2009). Going home to get on with life: Patients and carers experiences of being discharged home from hospital following a stroke. Disability and Rehabilitation, 31 (2), 61–72.Google Scholar
Glass, T.A., & Maddox, G.L. (1992). The quality and quantity of social support: Stroke recovery as psycho-social transition. Social Science & Medicine, 34, 1249–1261.CrossRefGoogle ScholarPubMed
Graneheim, U.H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.Google Scholar
King, R.B. (1996). Quality of life after stroke. Stroke, 27, 1467–1472.Google Scholar
Kirkevold, M. (2002). The unfolding illness trajectory of stroke. Disability and Rehabilitation, 24, 887–898.CrossRefGoogle ScholarPubMed
Kvigne, K., Kirkevold, M., & Gjengedal, E. (2004). Fighting back: Struggling to continue life and preserve the self. Health Care for Women International, 25, 370–387.CrossRefGoogle ScholarPubMed
Kwok, T., Lo, R.S., Wong, E., Wai-Kwong, T., Mok, V., & Kai-Sing, W. (2006). Quality of life of stroke survivors: A 1-year follow-up study. Archives of Physical Medicine and Rehabilitation, 87, 1177–1182.Google Scholar
Lammi, M.H., Smith, V.H., Tate, R.L., & Taylor, C.M. (2005). Minimally conscious state and recovery potential: A follow-up study 2 to 5 years after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 86, 746–754.CrossRefGoogle ScholarPubMed
Lawrence, M. (2010). Young adults’ experiences of stroke: A qualitative review of the literature. British Journal of Nursing, 19 (4), 241–248.CrossRefGoogle ScholarPubMed
Lewinter, M., & Mikkelsen, S. (1995). Patients' experience of rehabilitation after stroke. Disability and Rehabilitation, 17 (1), 3–9.CrossRefGoogle ScholarPubMed
Lister, R. (1999). Loss of ability to drive following stroke: The early experiences of three elderly people on discharge from hospital. British Journal of Occupational Therapy, 62 (11), 514–520.CrossRefGoogle Scholar
Lovibond, S.H., & Lovibond, P.F. (1995). Manual for the Depression Anxiety Stress Scales (2nd ed.). Sydney, Australia: Psychology Foundation.Google Scholar
Malec, J., & Lezak, M.D. (2003). Manual for the Mayo Portland Adaptability Inventory (MPAI-4). Portland, OR: Oregon Health and Sciences University.Google Scholar
Mayo, N.E., Wood-Dauphinee, S., Cote, R., Durcan, L., & Carlton, J. (2002). Activity, participation, and quality of life 6 months poststroke. Archives of Physical Medicine and Rehabilitation, 83, 1035–1042.Google Scholar
Michels, N. (1988). The transition from hospital to home: An exploratory study. Home Health Care Services Quarterly, 9 (1), 29–44.CrossRefGoogle ScholarPubMed
Murray, C.D., & Harrison, B. (2004). The meaning and experience of being a stroke survivor: An interpretative phenomenological analysis. Disability and Rehabilitation, 26 (13), 808–816.Google Scholar
Nalder, E., Fleming, J., Cornwell, P., Foster, M., Ownsworth, T., Shields, C., & Haines, T. (in press). Recording sentinel events in the life course of individuals with acquired brain injury. Brain Injury.Google Scholar
Nalder, E., Fleming, J., Foster, M., Cornwell, P., Shields, C., & Khan, A. (2011). Identifying factors associated with perceived success in the transition from hospital to home following brain injury. Journal of Head Trauma Rehabilitation. Advance online publication. doi: 10.1097/htr.0b013e3182168fb1Google Scholar
National Stroke Foundation. (2007). Walk in our shoes: Stroke survivors and carers report on support after stroke. Melbourne, Australia: National Stroke Foundation.Google Scholar
National Stroke Foundation. (2010a). Facts, figures and statistics. Retrieved from http://www.strokefoundation.com.au/facts-figures-and-statsGoogle Scholar
National Stroke Foundation. (2010b). Clinical guidelines for stroke management. Retrieved from http://www.strokefoundation.com.au/news/welcome/clinical-guidelines-for-acute-stroke-managementGoogle Scholar
Niemi, M., Laaksonen, R., Kotia, M., & Waltimo, O. (1988). Quality of life 4 years after stroke. Stroke, 19, 1101–1107.Google Scholar
O'Connell, B., Hanna, B., Penney, W., Pearce, J., Owen, M., & Warelow, P. (2001). Recovery after stroke: A qualitative perspective. Journal of Quality in Clinical Practice, 21, 120–125.CrossRefGoogle ScholarPubMed
Olofsson, A., Andersson, S., & Carlberg, B. (2005). ‘If only I manage to get home I'll get better’: Interviews with stroke patients after emergency stay in hospital on their experiences and needs. Clinical Rehabilitation, 19, 433–440.Google Scholar
Patomella, A., Johansson, K., & Tham, K. (2009). Lived experience of driving ability following stroke. Disability and Rehabilitation, 31 (9), 726–733.CrossRefGoogle ScholarPubMed
Pound, P., Bury, M., Gompertz, P., & Ebrahim, S. (1995). Stroke patients' views on their admission to hospital. British Medical Journal, 311 (6996), 18–22.CrossRefGoogle ScholarPubMed
Pound, P., Gompertz, P., & Ebrahim, S. (1998). A patient-centred study of the consequences of stroke, Clinical Rehabilitation, 12, 338–347.CrossRefGoogle ScholarPubMed
Rittman, M., Boylstein, C., Hinojosa, R., Hinojosa, M., & Haun, J. (2007). Transition experiences of stroke survivors following discharge home. Topics in Stroke Rehabilitation, 14 (2), 21–31.Google Scholar
Rittman, M., Faircloth, C., Boylstein, C., Gubrium, J.F., Williams, C., Puymbroeck, M., & Ellis, C. (2004). The experience of time in the transition from hospital to home following stroke. Journal of Rehabilitation Research & Development, 41 (3), 259–268.Google Scholar
Roding, J., & Lindstrom, B. (2003). Frustrated and invisible: Younger stroke patients' experiences of the rehabilitation process. Disability and Rehabilitation, 25, 867–874.CrossRefGoogle ScholarPubMed
Schlossberg, N.K. (1984). Counseling adults in transition: Link practice with theory. New York: Springer.Google Scholar
Secrest, J. (2000). Transformation of the relationship: The experience of primary support persons of stroke survivors. Rehabilitation Nursing, 25 (3), 93–99.CrossRefGoogle Scholar
Smith, L.N., Lawrence, M., Kerr, S.M., Langhorne, P., & Lees, K.R. (2003). Informal carers’ experience of caring for stroke survivors. Journal of Advanced Nursing, 46 (3), 235–244.CrossRefGoogle Scholar
Stone, S.D. (2005). Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. Disability and Rehabilitation, 27 (6), 293–304.Google Scholar
Tate, R., Hodgkinson, A., Veerabangsa, A., & Maggiotto, S. (1999). Measuring psychological recovery after traumatic brain injury: Psychometric properties of a new scale. Journal of Head Trauma Rehabilitation, 14 (6), 543–557.Google Scholar
Townend, W. (2001). Relation between Glasgow Outcome Scale Extended (GOSE) and the EQ-5D health status questionnaire after head injury. Journal of Neurological and Neurosurgical Psychiatry, 70, 267–268.CrossRefGoogle ScholarPubMed
Turner, B., Fleming, J., Cornwell, P., Worrall, L., Ownsworth, T., Haines, T., . . . Chenoweth, L. (2007). A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers. Brain Injury, 21 (11), 1119–1130.Google Scholar
Wiles, R., Ashburn, A., Payne, S., & Murphy, C. (2002). Patients' expectations of recovery following stroke: A qualitative study. Disability and Rehabilitation, 24 (16), 841–850.CrossRefGoogle ScholarPubMed
Wissel, J., Olver, J., & Sunnerhagen, K. (in press). Navigating the poststroke continuum of care. Journal of Stroke and Cerebrovascular Diseases.Google Scholar