Hostname: page-component-848d4c4894-cjp7w Total loading time: 0 Render date: 2024-06-22T07:42:37.814Z Has data issue: false hasContentIssue false
  • English
  • Français

Linked Lives: The Experiences of Family Caregivers During the Transition from Hospital to Home Following Traumatic Brain Injury

Published online by Cambridge University Press:  14 June 2012

Emily Nalder ,
Jennifer Fleming ,
Petrea Cornwell  and
Michele Foster
Emily Nalder*
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Jennifer Fleming
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. Centre for Functioning and Health Research, Queensland Health, Brisbane, Australia. Occupational Therapy Department, Princess Alexandra Hospital, Queensland Health, Brisbane, Australia.
Petrea Cornwell
Affiliation:
Griffith Health Institute, Behavioural Basis of Health, Griffith University, Brisbane, Australia. Metro North Health Service District, Queensland Health, Brisbane, Australia.
Michele Foster
Affiliation:
School of Social Work and Human Services, The University of Queensland, Brisbane, Australia.
*
Address for correspondence: Emily Nalder, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, 4072. E-mail: e.nalder@uq.edu.au
Get access

Abstract

The transition from hospital to home following traumatic brain injury (TBI) has been identified as the point where responsibility for care shifts from rehabilitation services to informal family caregivers. There has, however, been little research examining the experiences of family members during this important transition that involves adopting or, in some cases, resuming a caring role (e.g., a parent caring for an adult child). The aim of this qualitative investigation was to understand the experiences of family caregivers during the transition from hospital to home, defined as the first six months postdischarge. The sample included 10 family caregivers, of which all were female and either a mother, spouse or ex-partner of an individual with TBI. Semistructured interviews were conducted on average nine months following community reentry and data were analysed thematically using a framework approach. The overarching theme was that caregivers wished to move past the injury. This desire to move forward stemmed from a realisation of how their life had changed and the weight of the care responsibility. Caregivers were also aware of how the life of the individual with a TBI had changed and hoped for a return to normality (by regaining independence, engaging in meaningful occupation and having meaningful relationships). Implications of the findings for research and clinical practice are discussed. There is a need for services to support family caregivers during the transition from hospital to home.

Keywords

transitionfamily caregivercommunity integrationlived experience
Type
Articles
Information
Brain Impairment , Volume 13 , Issue 1: Transition to Community Living after Acquired Brain Injury , July 2012 , pp. 108 - 122
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

Arnaert, A., Filteau, N., & Sourial, R. (2006). Stroke patients in the acute care phase: Role of hope in self-healing. Holistic Nursing Practice, 20 (3), 137–146.CrossRefGoogle ScholarPubMed
Backstrom, B., & Sundin, K. (2007). The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic. Nursing Inquiry, 14 (3), 243–254.CrossRefGoogle ScholarPubMed
Bluvol, A., & Ford-Gilboe, M. (2004). Hope, health work and quality of life in families of stroke survivors. Journal of Advanced Nursing, 48 (4), 322–332.CrossRefGoogle ScholarPubMed
Borneman, T., Stahl, C., Ferrell, B.R., & Smith, D. (2002). The concept of hope in family caregivers of cancer patients at home. Journal of Hospice & Palliative Nursing, 4 (1), 21–33.CrossRefGoogle Scholar
Chwalisz, K., & Stark-Wroblewski, K. (1996). The subjective experiences of spouse caregivers of persons with brain injuries: A qualitative analysis. Applied Neuropsychology, 3 (1), 28–40.CrossRefGoogle ScholarPubMed
Creswell, J.W., & Plano Clark, V. (2007). Designing and conducting mixed methods research. Thousand Oaks, CA: Sage.Google Scholar
Cross, A., & Schneider, M. (2010). A preliminary qualitative analysis of the impact of hope on stroke recovery in women. Topics In Stroke Rehabilitation, 17 (6), 484–495. doi: 10.1310/tsr1706-484CrossRefGoogle ScholarPubMed
Doig, E., Fleming, J., & Tooth, L. (2001). Patterns of community integration 2–5 years post-discharge from brain injury rehabilitation. Brain Injury, 15 (9), 747–762.CrossRefGoogle ScholarPubMed
Elder, G.H.J., & Giele, J.Z. (Eds.). (2009). The craft of life course research. New York: Guilford Press.Google Scholar
Ergh, T.C., Rapport, L.J., Coleman, R.D., & Hanks, R.A. (2002). Predictors of caregiver and family functioning following traumatic brain injury: Social support moderates caregiver distress. The Journal of Head Trauma Rehabilitation, 17 (2), 155–174.CrossRefGoogle ScholarPubMed
Fraser, C. (1999). The experience of transition for a daughter caregiver of a stroke survivor. Journal of Neuroscience Nursing, 31 (1), 9–16.CrossRefGoogle ScholarPubMed
Gebhardt, M.C., McGehee, L.A., Grindel, C.G., & Testani-Dufour, L. (2011). Caregiver and nurse hopes for recovery of patients with acquired brain injury. Rehabilitation Nursing, 36 (1), 3–12.CrossRefGoogle ScholarPubMed
Gum, A., Snyder, C.R., & Duncan, P.W. (2006). Hopeful thinking, participation, and depressive symptoms three months after stroke. Psychology & Health, 21 (3), 319–334.CrossRefGoogle Scholar
Johnson, B.P. (1995). One family's experience with head injury: A phenomenological study. Journal of Neuroscience Nursing, 27 (2), 113–118.CrossRefGoogle ScholarPubMed
Jumisko, E., Lexell, J., & Soderberg, S. (2007). Living with moderate or severe traumatic brain injury: The meaning of family members’ experiences. Journal of Family Nursing, 13 (3), 353–369.CrossRefGoogle ScholarPubMed
Keenan, A., & Joseph, L. (2010). The needs of family members of severe traumatic brain injured patients during critical and acute care:A qualitative study. Canadian Journal of Neuroscience Nursing, 32 (3), 25–35.Google ScholarPubMed
Knight, R.G., Devereux, R., & Godfrey, H.P. (1998). Caring for a family member with a traumatic brain injury. Brain Injury, 12 (6), 467–481.CrossRefGoogle ScholarPubMed
Kolakowsky-Hayner, S.A., Miner, K.D., & Kreutzer, J. (2001). Long-term life quality and family needs after traumatic brain injury. Journal of Head Trauma Rehabilitation, 16 (4), 374–385.CrossRefGoogle ScholarPubMed
Kreutzer, J.S., Rapport, L.J., Marwitz, J.H., Harrison-Felix, C., Hart, T., Glenn, M., & Hammond, F. (2009). Caregivers’ well-being after traumatic brain injury: A multicenter prospective investigation. Archives Of Physical Medicine And Rehabilitation, 90 (6), 939–946.CrossRefGoogle ScholarPubMed
Kreutzer, J.S., Serio, C.D., & Bergquist, S. (1994). Family needs after brain injury: A quantitative analysis. The Journal of Head Trauma Rehabilitation. 9 (3), 104–115.CrossRefGoogle Scholar
Kreutzer, J.S., Stejskal, T.M., Ketchum, J.M., Marwitz, J.H., Taylor, L.A., & Menzel, J.C. (2009). A preliminary investigation of the brain injury family intervention: Impact on family members. Brain Injury, 23 (6), 535–547.CrossRefGoogle ScholarPubMed
Leathem, J., Heath, E., & Woolley, C. (1996). Relatives'perceptions of role change, social support and stress after traumatic brain injury. Brain Injury, 10 (1), 27–38.Google ScholarPubMed
Livingston, L.A., Kennedy, R.E., Marwitz, J.H., Arango-Lasprilla, J.C., Rapport, L.J., Bushnik, T., & Gary, K. (2010). Predictors of family caregivers’ life satisfaction after traumatic brain injury at one and two years post-injury: A longitudinal multi-center investigation. NeuroRehabilitation, 27 (1), 73–81.CrossRefGoogle ScholarPubMed
Marsh, N.V., Kersel, D.A., Havill, J.H., & Sleigh, J.W. (1998). Caregiver burden at 1 year following severe traumatic brain injury. Brain Injury, 12 (12), 1045–1059.CrossRefGoogle ScholarPubMed
Australian Bureau of Statistics. (1993). Disability, ageing and carers: Brain Injury and Stroke (ABS Catalogue No. 4437.0). Canberra: Author.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
Minichiello, V., Aroni, R., Timewell, E., & Alexander, L. (Eds.). (1995). In-depth interviewing (2nd ed.). Melbourne, Australia: Longman Australia.Google Scholar
Murray, H.M., Maslany, G.W., & Jeffery, B. (2006). Assessment of family needs following acquired brain injury in Saskatchewan. Brain Injury, 20 (6), 575–585.CrossRefGoogle ScholarPubMed
Nalder, E., Fleming, J., Cornwell, P., Shields, C., & Foster, M. (2011). Reflections on life: Experiences of individuals with brain injury during the transition from hospital to home. Manuscript submitted for publication.Google Scholar
Nalder, E., Fleming, J., Foster, M., Cornwell, P., Shields, C., & Khan, A. (2012). Identifying factors associated with perceived success in the transition from hospital to home following brain injury. Journal of Head Trauma Rehabilitation. 24 (2), 143–153. doi:10.1097/HTR.0b013e3182168fb1CrossRefGoogle Scholar
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), 218–226.CrossRefGoogle ScholarPubMed
O'Connor, C., Colantonio, A., & Polatajko, H. (2005). Long-term symptoms and limitations of activity of people with Traumatic Brain Injury: A ten year follow-up. Psychological Reports, 97 (1), 169–179.CrossRefGoogle ScholarPubMed
Patton, M. (1990). Qualitative evaluation and research methods: A systematic approach (2nd ed.). Newbury Park, CA: Sage.Google Scholar
Peleg, G., Barak, O., Harel, Y., Rochberg, J., & Hoofien, D. (2009). Hope, dispositional optimism and severity of depression following traumatic brain injury. Brain Injury, 23 (10), 800–808. doi: 10.1080/02699050903196696CrossRefGoogle ScholarPubMed
Penna, S., Novack, T.A., Carlson, N., Grote, M., Corrigan, J.D., & Hart, T. (2010). Residence following traumatic brain injury: a longitudinal study. The Journal of Head Trauma Rehabilitation, 25 (1), 52–60.CrossRefGoogle ScholarPubMed
QSR International. (2010). NVivo qualitative data analysis software (Version 9)[Computer software]. Victoria, Australia: QSR International Pty Ltd.Google Scholar
Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. Thousand Oaks, CA: Sage.Google Scholar
Rotondi, A.J., Sinkule, J., Balzer, K., Harris, J., & Moldovan, R. (2007). A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. The Journal of Head Trauma Rehabilitation, 22 (1), 14–25.CrossRefGoogle ScholarPubMed
Tate, R., Broe, A., Hodgkinson, A., Cameron, I., & Soo, C. (2003). Long-term psychosocial outcome after severe traumatic brain injury: A 20–25-year follow-up. Paper presented at the 26th annual Brain Impairment conference, Sydney, Australia.Google Scholar
Tooth, L., McKenna, K., Strong, J., Ottenbacher, K., Connell, J., & Cleary, M. (2001). Rehabilitation outcomes for brain injured patients in Australia: Functional status, length of stay and discharge destination. Brain Injury, 15 (7), 613–631.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.CrossRefGoogle ScholarPubMed
Turner, B., Fleming, J., Ownsworth, T., & Cornwell, P. (2010). Perceived service and support needs during transition from hospital to home following acquired brain injury. Disability & Rehabilitation, 33 (10), 818–829. doi: 10.3109/09638288.2010.513422CrossRefGoogle ScholarPubMed
Turner, B., Fleming, J., Parry, J., Vromans, M., Cornwell, P., Gordon, C., & Ownsworth, T. (2010). Caregivers of adults with acquired brain injury: The emotional impact of transition from hospital to home. Brain Impairment, 11 (3), 281–292.CrossRefGoogle Scholar
Turner, B.J., Fleming, J.M., Ownsworth, T. L., & Cornwell, P.L. (2008). The transition from hospital to home for individuals with acquired brain injury: A literature review and research recommendations. Disability & Rehabilitation, 30 (16), 1153–1176. doi: 10.1080/09638280701532854CrossRefGoogle ScholarPubMed
Wells, R., Dywan, J., & Dumas, J. (2005). Life satisfaction and distress in family caregivers as related to specific behavioural changes after traumatic brain injury. Brain Injury, 19 (13), 1105–1115.CrossRefGoogle ScholarPubMed
Willis, J.W., Jost, M., & Nilakanta, R. (2007). Foundations of qualitative research: Interpretive and critical approaches. Thousand Oaks, CA: Sage.CrossRefGoogle Scholar
World Health Organization. (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: Author.Google Scholar