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A ‘Network of Understanding and Compassion’: A Qualitative Study of Survivor Perspectives on Unmet Needs After Traumatic Brain Injury (TBI) in Regional Communities

Published online by Cambridge University Press:  04 November 2021

Maria Jeannette Hennessy Open the ORCID record for Maria Jeannette Hennessy [Opens in a new window]  and
Karen A. Sullivan
Maria Jeannette Hennessy*
Affiliation:
Department of Psychology, James Cook University Australia Singapore, Singapore, Singapore
Karen A. Sullivan
Affiliation:
Queensland University of Technology School of Psychology and Counselling, Kelvin Grove, Brisbane, Queensland, Australia
*
*Corresponding author. Email: mariahennessy67@gmail.com
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Abstract

Objective:

This qualitative study aimed to identify the service and support needs of people with a recent history of traumatic brain injury (TBI) living in the community.

Methods:

A postal survey was sent to 662 people 6–18 months after hospital admission for a mild-to-severe TBI. The survey included an open-ended item (‘wish-basket’) for collecting ideas about important unmet needs.

Results:

Responses from 53 individuals were coded and processed using thematic analysis. Five themes (n = 39) were identified, three of which were related to personal needs. These personal wishes were about being symptom-free, independent and emotionally supported by, and connected to, loved ones. The remaining themes were about the wished-for changes to the health system and society, such as wishing for health care continuity (as opposed to being abandoned), and for greater understanding and support by society.

Conclusions:

There is scope to improve the services and support for people living with TBI in the community. This includes reconsidering the way that discharge occurs, addressing the personal needs that remain when living in the community and promoting greater social awareness of TBI to counteract disadvantage.

Keywords

Brain injuryhead injuryrehabilitationqualitative researchservice delivery
Type
Original Article
Information
Brain Impairment , Volume 24 , Issue 1 , March 2023 , pp. 27 - 38
Copyright
© The Author(s), 2021. Published by Cambridge University Press on behalf of Australasian Society for the Study of Brain Impairment

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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 and Rehabilitation, 39(17), 1683–1694. doi: 10.1080/09638288.2016.1211755 CrossRefGoogle Scholar
Australian Government Department of Health. (2010). Principles of recovery oriented mental health practice: Implementation guidelines for non-government community services. Retrieved from ∼https://www1.health.gov.au/internet/publications/publishing.nsf/Content/mental-pubs-i-nongov-toc∼mental-pubs-i-nongov-pri Google Scholar
Beck, C. T. (1993). Qualitative research: The evaluation of its credibility, fittingness, and auditability. Western Journal of Nursing Research, 15(2), 263–266. doi: 10.1177/019394599301500212 CrossRefGoogle ScholarPubMed
Brenner, E. (2003). Consumer-focused psychological assessment. Professional Psychology: Research & Practice, 34, 240–247. doi: 10.1037/0735-7028.34.3.240 CrossRefGoogle Scholar
Brown, A. W., Moessner, A. M., Mandrekar, J., Diehl, N. N., Leibson, C. L., & Malec, J. F. (2011). A survey of very-long-term outcomes after traumatic brain injury among members of a population-based incident cohort. J Neurotrauma, 28(2), 167–176. doi: 10.1089/neu.2010.1400 CrossRefGoogle ScholarPubMed
Burgess, P., Pirkis, J., Coombs, T., & Rosen, A. (2011). Assessing the value of existing recovery measures for routine use in Australian mental health services. Australian & New Zealand Journal of Psychiatry, 45(4), 267–280. doi: 10.3109/00048674.2010.549996 CrossRefGoogle ScholarPubMed
Conneeley, A. L. (2012). Transitions and brain injury: A qualitative study exploring the journey of people with traumatic brain injury. Brain Impairment, 13(1), 72–84. doi: 10.1017/BrImp.2012.3 CrossRefGoogle Scholar
Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage Publications.Google Scholar
Denzin, N. K., & Lincoln, Y. S. (2018). The Sage handbook of qualitative research (5th ed.). Los Angeles: Sage.Google Scholar
Dijkers, M. (2000). The community integration questionnaire. Retrieved from http://www.tbims.org/combi/ciq Google Scholar
Epping-Jordan, J. E., Pruitt, S. D., Bengoa, R., & Wagner, E. H. (2004). Improving the quality of health care for chronic conditions. Quality and Safety in Health Care, 13(4), 299–305. doi: 10.1136/qshc.2004.010744 CrossRefGoogle ScholarPubMed
Facey, K., Boivin, A., Gracia, J., Hansen, H. P., Lo Scalzo, A., Mossman, J., & Single, A. (2010). Patients’ perspectives in health technology assessment: A route to robust evidence and fair deliberation. International Journal of Technology Assessment in Health Care, 26(3), 334–340.CrossRefGoogle ScholarPubMed
Fadyl, J. K., Theadom, A., Channon, A., & McPherson, K. M. (2019). Recovery and adaptation after traumatic brain injury in New Zealand: Longitudinal qualitative findings over the first two years. Neuropsychological Rehabilitation, 29(7), 1095–1112. doi: 10.1080/09602011.2017.1364653 CrossRefGoogle ScholarPubMed
Fleming, J., Sampson, J., Cornwell, P., Turner, B., & Griffin, J. (2012). Brain injury rehabilitation: The lived experience of inpatients and their family caregivers. Scandinavian Journal of Occupational Therapy, 19(2), 184–193. doi: 10.3109/11038128.2011.611531 CrossRefGoogle ScholarPubMed
Fresson, M., Dardenne, B., Geurten, M., & Meulemans, T. (2017). Stereotype content of people with acquired brain injury: Warm but incompetent. Journal of Applied Social Psychology, 47(10), 539–552. doi: 10.1111/jasp.12459 CrossRefGoogle Scholar
Gracey, F., Palmer, S., Rous, B., Psaila, K., Shaw, K., O’Dell, J., & Mohamed, S. (2008). Feeling part of things”: Personal construction of self after brain injury. Neuropsychological Rehabilitation, 18, 627–650. doi: 10.1080/09602010802041238 CrossRefGoogle ScholarPubMed
Hall, A. E., Bryant, J., Sanson-Fisher, R. W., Fradgley, E. A., Proietto, A. M., & Roos, I. (2018). Consumer input into health care: Time for a new active and comprehensive model of consumer involvement. Health Expectations, 21(4), 707–713. doi: 10.1111/hex.12665 CrossRefGoogle ScholarPubMed
Hall, J. M., & Stevens, P. E. (1991). Rigor in feminist research. Advances in Nursing Science, 13(3), 16–29. doi: 10.1097/00012272-199103000-00005 CrossRefGoogle ScholarPubMed
Hellweg, S., & Johannes, S. (2008). Physiotherapy after traumatic brain injury: A systematic review of the literature. Brain Injury, 22(5), 365–373. doi: 10.1080/02699050801998250 CrossRefGoogle ScholarPubMed
Hennessy, M., & Sullivan, K. A.(under review). Quality of life, community integration, service needs, and clinical outcomes of people with traumatic brain injury in urban, regional, and remote areas of Queensland. Australia Journal of Rural Health.Google Scholar
Holloway, M., Orr, D., & Clark-Wilson, J. (2019). Experiences of challenges and support among family members of people with acquired brain injury: A qualitative study in the UK. Brain Injury, 33(4), 401–411. doi: 10.1080/02699052.2019.1566967 CrossRefGoogle ScholarPubMed
Huebner, R. A., Johnson, K., Bennett, C. M., & Schneck, C. (2003). Community participation and quality of life outcomes after adult traumatic brain injury. American Journal of Occupational Therapy, 57(2), 177–185. doi: 10.5014/ajot.57.2.177 CrossRefGoogle ScholarPubMed
Hyder, A. A., Wunderlich, C. A., Puvanachandra, P., Gururaj, G., & Kobusingye, O. (2007). The impact of traumatic brain injuries: A global perspective. Journal of Neurorehabilitation, 22(5), 341–353.CrossRefGoogle ScholarPubMed
Johnston, M. V., Goverover, Y., & Dijkers, M. (2005). Community activities and individuals’ satisfaction with them: Quality of life in the first year after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 86(4), 735–745. doi: 10.1016/j.apmr.2004.10.031 CrossRefGoogle ScholarPubMed
Jones, K., Theadom, A., Prah, P., Starkey, N., Barker-Collo, S., Ameratunga, S., & Feigin, V. L. (2020). Changes over time in family members of adults with mild traumatic brain injury. Brain Impairment, 21(2), 154–172. doi: 10.1017/BrImp.2019.27 CrossRefGoogle Scholar
Kidd, S. D. (2019). Hermeneutic research: An experiential method. New York, NY: Peter Lang.CrossRefGoogle Scholar
Koch, T. (1995). Interpretive approaches in nursing research: The influence of husserl and heidegger. Journal of Advanced Nursing, 21(5), 827–836. doi: 10.1046/j.1365-2648.1995.21050827.x CrossRefGoogle ScholarPubMed
Kreutzer, J. S. (2000). The service obstacles scale. Retrieved from http://www.tbims.org/combi/sos/ Google Scholar
Laverty, S. M. (2003). Hermeneutic phenomenology and phenomenology: A comparison of historical and methodological considerations. International Journal of Qualitative Methods, 2(3), 21–35. doi: 10.1177/160940690300200303 CrossRefGoogle Scholar
Lefebvre, H., Cloutier, G., & Josée Levert, M. (2008). Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22(7-8), 535–543. doi: 10.1080/02699050802158243 CrossRefGoogle ScholarPubMed
Lefebvre, H., Pelchat, D., Swaine, B., Gélinas, 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. doi: 10.1080/02699050400025026 CrossRefGoogle ScholarPubMed
Leith, K. H., Phillips, L., & Sample, P. L. (2004). Exploring the service needs and experiences of persons with TBI and their families: The South Carolina experience. Brain Injury, 18(12), 1191–1208. doi: 10.1080/02699050410001719943 CrossRefGoogle ScholarPubMed
Levack, W. M., Kayes, N. M., & Fadyl, J. K. (2010). Experience of recovery and outcome following traumatic brain injury: A metasynthesis of qualitative research. Disability & Rehabilitation, 32(12), 986–999. doi: 10.3109/09638281003775394 CrossRefGoogle ScholarPubMed
Liamputtong, P. (2013). Qualitative research methods (4th ed.). South Melbourne: Oxford University Press.Google Scholar
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage Publications.CrossRefGoogle Scholar
Linden, M. A., & Crothers, I. R. (2006). Violent, caring, unpredictable: Public views on survivors of brain injury. Archives of Clinical Neuropsychology, 21(8), 763–770. doi: 10.1016/j.acn.2006.08.010 CrossRefGoogle ScholarPubMed
McLellan, T., Bishop, A., & McKinlay, A. (2010). Community attitudes toward individuals with traumatic brain injury. Journal of the International Neuropsychological Society, 16(4), 705–710. doi: 10.1017/S1355617710000524 CrossRefGoogle ScholarPubMed
Milte, R., Ratcliffe, J., Bradley, C., Shulver, W., & Crotty, M. (2019). Evaluating the quality of care received in long-term care facilities from a consumer perspective: development and construct validity of the Consumer Choice Index – Six Dimension instrument. Ageing and Society, 39(1), 138–160. doi: 10.1017/S0144686X17000861 CrossRefGoogle Scholar
Minney, M. J., Roberts, R. M., Mathias, J. L., Raftos, J., & Kochar, A. (2019). Service and support needs following pediatric brain injury: Perspectives of children with mild traumatic brain injury and their parents. Brain Injury, 33(2), 168–182. doi: 10.1080/02699052.2018.1540794 CrossRefGoogle ScholarPubMed
Mueller, C., Wang, Y., Brooks, A., Morant, N., Sullivan, P., & Raymont, V. (2017). Attending to the wound and the person’ – patients’ experiences and expectations of a newly established traumatic brain injury clinic. Brain Injury, 31(13-14), 1863–1870. doi: 10.1080/02699052.2017.1346290 CrossRefGoogle Scholar
Muganga, L. (2015). The importance of hermeneutic theory in understanding and appreciating interpretive inquiry as a methodology. Journal of Social Research & Policy, 6(1), 65–88.Google Scholar
Nochi, M. (1998). "Loss of self" in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science & Medicine, 46(7), 869–878. doi: 10.1016/S0277-9536(97)00211-6,CrossRefGoogle ScholarPubMed
Paterson, B., & Scott-Findlay, S. (2002). Critical issues in interviewing people with traumatic brain injury. Qualitative Health Research, 12(3), 399–409. doi: 10.1177/104973202129119973 CrossRefGoogle ScholarPubMed
Piccenna, L., Lannin, N. A., 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. doi: 10.3109/02699052.2015.1113569 CrossRefGoogle Scholar
Polkinghorne, D. (1983). Methodology for the human sciences : Systems of inquiry. Albany: State University of New York Press.Google Scholar
Ponsford, J. (2013). Factors contributing to outcome following traumatic brain injury. Neurorehabilitation, 32(4), 803–815. doi: 10.3233/nre-130904 CrossRefGoogle ScholarPubMed
Proctor, C. J., & Best, L. A. (2019). Social and psychological influences on satisfaction with life after brain injury. Disability & Health Journal, 12(3), 387–393. doi: 10.1016/j.dhjo.2019.01.001 CrossRefGoogle ScholarPubMed
Queensland Health. (2016). Statewide adult brain injury rehabilitation health service plan 2016-2026 . Retrieved from https://www.health.qld.gov.au/__data/assets/pdf_file/0029/652628/statewide-abi-rehab-plan-16-26.pdf Google Scholar
Queensland Health.(n.d.).NDIS roll out Queensland. Retrieved from https://www.communities.qld.gov.au/swe/ndis-rollout-queensland Google Scholar
Redpath, S. J., Williams, W. H., Hanna, D., Linden, M. A., Yates, P., & Harris, A. (2010). Healthcare professionals’ attitudes towards traumatic brain injury (TBI): The influence of profession, experience, aetiology and blame on prejudice towards survivors of brain injury. Brain Injury, 24(6), 802–811. doi: 10.3109/02699051003709623 CrossRefGoogle ScholarPubMed
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. Journal of Head Trauma & Rehabilitation, 22(1), 14–25. doi: 10.1097/00001199-200701000-00002 CrossRefGoogle ScholarPubMed
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), 855–874. doi: 10.1080/026990598122089 CrossRefGoogle Scholar
Schneiderman, A. I., Braver, E. R., & Kang, H. K. (2008). Understanding sequelae of injury mechanisms and mild traumatic brain injury incurred during the conflicts in Iraq and Afghanistan: Persistent postconcussive symptoms and posttraumatic stress disorder. American Journal of Epidemiology, 167(12), 1446–1452. doi: 10.1093/aje/kwn068 CrossRefGoogle ScholarPubMed
Shepperd, S., Lannin, N. A., Clemson, L. M., McCluskey, A., Cameron, I. D., & Barras, S. L. (2013). Discharge planning from hospital to home. The Cochrane Database of Systematic Reviews, 1, Cd000313. doi: 10.1002/14651858.CD000313.pub4,Google Scholar
Slettebø, Å., Caspari, S., Lohne, V., Aasgaard, T., & Nåden, D. (2009). Dignity in the life of people with head injuries. Journal of Advanced Nursing, 65(11), 2426–2433. doi: 10.1111/j.1365-2648.2009.05110.x CrossRefGoogle ScholarPubMed
Stiekema, A. P. M., Winkens, I., Ponds, R., De Vugt, M. E., & Van Heugten, C. M. (2020). Finding a new balance in life: A qualitative study on perceived long-term needs of people with acquired brain injury and partners. Brain Injury, 34(3), 421–429. doi: 10.1080/02699052.2020.1725125 CrossRefGoogle ScholarPubMed
Van Manen, M. (2016). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. London: Routledge.CrossRefGoogle Scholar
Wilkin, D., & Hughes, B. (1987). Residential care of elderly people: The consumers’ views. Ageing and Society, 7(2), 175–201. doi: 10.1017/S0144686X00012551 CrossRefGoogle Scholar
World Health Organization. (2002). Active aging: A policy framework. Retrieved from http://www.who.int/ageing/active_ageing/en/ Google Scholar
Ylvisaker, M., & Feeney, T. (2000). Reconstruction of identity after brain injury. Brain Impairment, 1(1), 12–28. doi: 10.1375/brim.1.1.12 CrossRefGoogle Scholar