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Research Article

A window into the reality of families living long term with challenging behaviours after a TBI

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Received 01 Dec 2023, Accepted 06 May 2024, Published online: 23 May 2024

References

  • Adams, D., & Dahdah, M. (2016). Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers. NeuroRehabilitation, 39(2), 223–237. https://doi.org/10.3233/NRE-161353
  • Alderman, N., & Worthington, A. (2023). Managing challenging behaviour following acquired brain injury: Assessment, intervention and measuring outcomes. Taylor & Francis.
  • Analytis, P., Hicks, A. J., Gould, K. R., Feeney, T. J., & Ponsford, J. (2021). Clinical perspectives on delivering a positive behaviour support intervention for challenging behaviours following acquired brain injury. Neuropsychological Rehabilitation, 281–304. https://doi.org/10.1080/09602011.2021.2010574
  • Anderson, M. I., Parmenter, T. R., & Mok, M. (2002). The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: Path model analysis. Brain Injury, 16(9), 743–757. https://doi.org/10.1080/02699050210128906
  • Arciniegas, D. B., & Wortzel, H. S. (2014). Emotional and behavioral dyscontrol after traumatic brain injury. Psychiatric Clinics of North America, 37(1), 31–53. https://doi.org/10.1016/j.psc.2013.12.001
  • Arnould, A., Dromer, E., Rochat, L., Van der Linden, M., & Azouvi, P. (2016). Neurobehavioral and self-awareness changes after traumatic brain injury: Towards new multidimensional approaches. Annals of Physical and Rehabilitation Medicine, 59(1), 18–22. https://doi.org/10.1016/j.rehab.2015.09.002
  • Bayley, M., Gargaro, J., Kua, A., Pagé, E., Lalancette Hébert, M., et al. (2023a). A key components of TBI rehabilitation. In Canadian clinical practice guideline for the rehabilitation of adults with moderate to severe traumatic brain injury. University Health Network. https://kite-uhn.com/brain-injury/en/guidelines/principles-for-organizing-rehabilitation-services
  • Bayley, M., Gargaro, J., Kua, A., Pagé, E., Lalancette Hébert, M., et al. (2023b). R. Neurobehaviour and mental health. In Canadian clinical practice guideline for the rehabilitation of adults with moderate to severe traumatic brain injury. University Health Network. https://kite-uhn.com/brain-injury/en/guidelines/principles-for-organizing-rehabilitation-services
  • Benedictus, M. R., Spikman, J. M., & van der Naalt, J. (2010). Cognitive and behavioral impairment in traumatic brain injury related to outcome and return to work. Archives of Physical Medicine and Rehabilitation, 91(9), 1436–1441. https://doi.org/10.1016/j.apmr.2010.06.019
  • Bermejo-Toro, L., Sanchez-Izquierdo, M., Calvete, E., & Roldan, M. A. (2020). Quality of life, psychological well-being, and resilience in caregivers of people with acquired brain injury (ABI). Brain Injury, 34(4), 480–488. https://doi.org/10.1080/02699052.2020.1725127
  • Bezeau, S. C., Bogod, N. M., & Mateer, C. A. (2004). Sexually intrusive behaviour following brain injury: Approaches to assessment and rehabilitation. Brain Injury, 18(3), 299–313. https://doi.org/10.1080/02699050310001617398
  • Bodley-Scott, S. E. M., & Riley, G. A. (2015). How partners experience personality change after traumatic brain injury – its impact on their emotions and their relationship. Brain Impairment, 16(3), 205–220. https://doi.org/10.1017/BrImp.2015.22
  • Boisvert, I., & Mercier, M. (2021). Troubles graves du comportement: meilleures pratiques en prévention, en évaluation et en intervention auprès des personnes qui présentent une déficience intellectuelle, une déficience physique ou un trouble du spectre de l’autisme.
  • Braine, M. E. (2011). The experience of living with a family member with challenging behavior post acquired brain injury. Journal of Neuroscience Nursing, 43(3), 156–164. https://doi.org/10.1097/JNN.0b013e3182135bb2
  • Brooks, J., & Gilkes, C. (2023). The clinical realities of delivering neurobehavioural rehabilitation in the community. In Nick Alderman & Andrew Worthington (Eds.), Managing challenging behaviour following acquired brain injury (pp. 176–188). Routledge.
  • Brooks, N., McKinlay, W., Symington, C., Beattie, A., & Campsie, L. (1987). Return to work within the first seven years of severe head injury. Brain Injury, 1(1), 5–19. https://doi.org/10.3109/02699058709034439
  • Carmichael, J., Hicks, A., Gould, K., Feeney, T., Analytis, P., & Ponsford, J. (2021). ‘We struggle and muddle.’ A qualitative study exploring community ABI therapists’ experiences of using, training in and implementing behaviour interventions. Brain Impairment, 22(1), 34–49. https://doi.org/10.1017/BrImp.2020.6
  • Carver, C. (2013). Coping. In M. D. Gellman, & J. R. Turner (Eds.), Encyclopedia of behavioral medicine (pp. 496–500). Springer.
  • Chassman, S., Calhoun, K., Bacon, B., Chaparro Rucobo, S., Goodwin, E., Gorgens, K., & Brisson, D. (2022). Correlates of acquiring a traumatic brain injury before experiencing homelessness: An exploratory study. Social Sciences, 11(8), https://doi.org/10.3390/socsci11080376
  • 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
  • Eisikovits, Z., & Koren, C. (2010). Approaches to and outcomes of dyadic interview analysis. Qualitative Health Research, 20(12), 1642–1655. https://doi.org/10.1177/1049732310376520
  • Farrer, T. J., & Hedges, D. W. (2011). Prevalence of traumatic brain injury in incarcerated groups compared to the general population: A meta-analysis. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 35(2), 390–394. https://doi.org/10.1016/j.pnpbp.2011.01.007
  • Feeney, T. J. (2010). There’s always something that works: Principles and practices of positive support for individuals with traumatic brain injury and problem behaviors. Seminars in Speech and Language, 31(3), 145–161. https://doi.org/10.1055/s-0030-1257531
  • Fisher, A., Bellon, M., Lawn, S., & Lennon, S. (2017). Identifying current practices and supports in behaviour management following ABI in South Australian community settings: A Delphi study. Brain Impairment, 18(2), 211–225. https://doi.org/10.1017/BrImp.2016.36
  • Fisher, A., Bellon, M., Lawn, S., & Lennon, S. (2018). The development of a positive behaviour support programme for families following acquired brain injury. International Journal of Therapy and Rehabilitation, 25(10), 538–551.
  • Fisher, A., Bellon, M., Lawn, S., & Lennon, S. (2021). Family perspectives on the acceptability and usefulness of the FAB positive behaviour support program: A pilot study. Brain Injury, 35(5), 609–619. https://doi.org/10.1080/02699052.2021.1894479
  • Folkman, S. (2013). Stress: Appraisal and coping. In M. D. Gellman, & J. R. Turner (Eds.), Encyclopedia of behavioral medicine (pp. 1913–1915). Springer.
  • Gould, K., Hicks, A., Hopwood, M., Kenardy, J., Krivonos, I., Warren, N., & Ponsford, J. (2019). The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury. Neuropsychological Rehabilitation, 29(3), 376–394. https://doi.org/10.1080/09602011.2017.1307767
  • Gould, K., Ponsford, J., Hicks, A., Hopwood, M., Renison, B., & Feeney, T. (2019). Positive behaviour support for challenging behaviour after acquired brain injury: An introduction to PBS + PLUS and three case studies. Neuropsychological Rehabilitation, 57–91. https://doi.org/10.1080/09602011.2019.1656647
  • Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903
  • Hendryckx, C., Couture, M., Gosselin, N., Nalder, E., Gagnon-Roy, M., Thibault, G., & Bottari, C. (2023). The dual reality of challenging behaviours: Overlapping and distinct perspectives of individuals with TBI and their caregivers. Neuropsychological Rehabilitation, 1–25. https://doi.org/10.1080/09602011.2023.2212172
  • Hendryckx, C., Nalder, E., Drake, E., Leclaire, E., Pituch, E., Gouin-Vallerand, C., Wang, R. H., Poulin, V., Paquet, V., & Bottari, C. (2023). Managing challenging behaviours in adults with traumatic brain injury: A scoping review of technology-based interventions. Journal of Rehabilitation and Assistive Technologies Engineering, 10, 1–20. https://doi.org/10.1177/20556683231191975
  • Huet, M., Dany, L., & Apostolidis, T. (2018). Emotional labour of caregivers confronted with aggressive brain-injured patients. Archives of Psychiatric Nursing, 32(3), 360–366. https://doi.org/10.1016/j.apnu.2017.11.026
  • Johnson, R., & Balleny, H. (1996). Behaviour problems after brain injury: Incidence and need for treatment. Clinical Rehabilitation, 10(2), 173–180. https://doi.org/10.1177/026921559601000215
  • Kelly, G., Brown, S., Gillett, L., Descallar, J., & Simpson, G. K. (2020). Can behaviour support interventions successfully treat inappropriate sexual behaviour after acquired brain injury in community settings? A case series (N = 24). Neuropsychological Rehabilitation, 1–22. https://doi.org/10.1080/09602011.2020.1830807
  • Kelly, G., Brown, S., Todd, J., & Kremer, P. (2008). Challenging behaviour profiles of people with acquired brain injury living in community settings. Brain Injury, 22(6), 457–470. https://doi.org/10.1080/02699050802060647
  • Kelly, G., & Parry, A. (2008). Managing challenging behaviour of people with acquired brain injury in community settings: The first 7 years of a specialist clinical service. Brain Impairment, 9(3), 293–304. https://doi.org/10.1375/brim.9.3.293
  • Kitter, B., & Sharman, R. (2015). Caregivers’ support needs and factors promoting resiliency after brain injury. Brain Injury, 29(9), 1082–1093. https://doi.org/10.3109/02699052.2015.1018323
  • Kratz, A. L., Sander, A. M., Brickell, T. A., Lange, R. T., & Carlozzi, N. E. (2017). Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychological Rehabilitation, 27(1), 16–37. https://doi.org/10.1080/09602011.2015.1051056
  • Lamontagne, M. E., Ouellet, M. C., & Simard, J. F. (2009). A descriptive portrait of human assistance required by individuals with brain injury. Brain Injury, 23(7-8), 693–701. https://doi.org/10.1080/02699050902970760
  • Lansdell, G. T., Saunders, B. J., Eriksson, A., & Bunn, R. (2021). Strengthening the connection between acquired brain injury (ABI) and family violence: The importance of ongoing monitoring, research and inclusive terminology. Journal of Family Violence, https://doi.org/10.1007/s10896-021-00278-1
  • Lefebvre, H., Cloutier, G., & Levert, M. J. (2008). Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22(7-8), 535–543. https://doi.org/10.1080/02699050802158243
  • 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. https://doi.org/10.1080/02699050410001719943
  • Luauté, J., Hamonet, J., Pradat-Diehl, P., & le groupe, S. O. F. M. E. R. (2016). Behavioral and affective disorders after brain injury: French guidelines for prevention and community supports. Annals of Physical and Rehabilitation Medicine, 59(1), 68–73. https://doi.org/10.1016/j.rehab.2015.10.007
  • Manchester, D., Hodgkinson, A., & Casey, T. (1997). Prolonged, severe behavioural disturbance following traumatic brain injury: What can be done. Brain Injury, 11(8), 605–618. https://doi.org/10.1080/026990597123296
  • Marshall, C. A., Nalder, E., Colquhoun, H., Lenton, E., Hansen, M., Dawson, D. R., Zabjek, K., & Bottari, C. (2019). Interventions to address burden among family caregivers of persons aging with TBI: A scoping review. Brain Injury, 33(3), 255–265. https://doi.org/10.1080/02699052.2018.1553308
  • McDonald, S., Trimmer, E., Newby, J., Grant, S., Gertler, P., & Simpson, G. K. (2019). Providing on-line support to families of people with brain injury and challenging behaviour: A feasibility study. Neuropsychological Rehabilitation, 392–413. https://doi.org/10.1080/09602011.2019.1696846
  • McIntyre, M., Ehrlich, C., & Kendall, E. (2020). Informal care management after traumatic brain injury: Perspectives on informal carer workload and capacity. Disability and Rehabilitation, 42(6), 754–762. https://doi.org/10.1080/09638288.2018.1508511
  • McIsaac, K. E., Moser, A., Moineddin, R., Keown, L. A., Wilton, G., Stewart, L. A., Colantonio, A., Nathens, A. B., & Matheson, F. I. (2016). Association between traumatic brain injury and incarceration: A population-based cohort study. CMAJ Open, 4(4), E746–E753. https://doi.org/10.9778/cmajo.20160072
  • Miles, M. B., Huberman, A. M., & Saldana, J. (2014). Qualitative data analysis: A methods sourcebook (Edition 3). SAGE.
  • Mooney, P., Brooks, J., & Diggin, N. (2023). Behaviour support in the context of neurobehavioural rehabilitation. In Managing challenging behaviour following acquired brain injury (pp. 111–125). Routledge.
  • Nalder, E., Fleming, J., Cornwell, P., & Foster, M. (2012). Linked lives: The experiences of family caregivers during the transition from hospital to home following traumatic brain injury. Brain Impairment, 13(1), 108–122. https://doi.org/10.1017/BrImp.2012.4
  • Nalder, E. J., Zabjek, K., Dawson, D. R., Bottari, C. L., Gagnon, I., McFadyen, B. J., Hunt, A. W., McKenna, S., Ouellet, M. C., Giroux, S., Cullen, N., Niechwiej-Szwedo, E., & Onf-Repar ABI Team. (2018). Research priorities for optimizing long-term community integration after brain injury. Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 45(6), 643–651. https://doi.org/10.1017/cjn.2018.334
  • Neurotrauma Care Pathways. (2023). Moderate to severe TBI pathway diagram. https://www.neurotraumapathways.ca/tbi
  • Odumuyiwa, T., Kennedy, M., Norman, A., Holloway, M., Suffield, F., Forrest, H., & Dicks, H. (2019). Improving access to social care services following acquired brain injury: A needs analysis. Journal of Long-Term Care, 164–175. https://doi.org/10.31389/jltc.6
  • Palmisano, B., & Arco, L. (2012). Changes in functional behaviour of adults with brain injury and spouse-caregiver burden with in-home neurobehavioural intervention. Behaviour Change, 24(1), 36–49. https://doi.org/10.1375/bech.24.1.36
  • Ponsford, J. L., Hicks, A. J., Gould, K. R., Downing, M. G., Hopwood, M., & Feeney, T. J. (2022). Positive behaviour support for adults with acquired brain injury and challenging behaviour: A randomised controlled trial. Annals of Physical and Rehabilitation Medicine, 65(2), https://doi.org/10.1016/j.rehab.2021.101604
  • Sabaz, M., Simpson, G. K., Walker, A. J., Rogers, J. M., Gillis, I., & Strettles, B. (2014). Prevalence, comorbidities, and correlates of challenging behavior among community-dwelling adults with severe traumatic brain injury. Journal of Head Trauma Rehabilitation, 29(2), E19–E30. https://doi.org/10.1097/HTR.0b013e31828dc590
  • Schonberger, M., Ponsford, J., Olver, J., & Ponsford, M. (2010). A longitudinal study of family functioning after TBI and relatives’ emotional status. Neuropsychological Rehabilitation, 20(6), 813–829. https://doi.org/10.1080/09602011003620077
  • Steward, K. A., & Kretzmer, T. (2021). Anosognosia in moderate-to-severe traumatic brain injury: A review of prevalence, clinical correlates, and diversity considerations. The Clinical Neuropsychologist, 2021–2040. https://doi.org/10.1080/13854046.2021.1967452
  • Stubbs, J. L., Thornton, A. E., Gicas, K. M., O’Connor, T. A., Livingston, E. M., Lu, H. Y., Mehta, A. K., Lang, D. J., Vertinsky, A. T., Field, T. S., Heran, M. K., Leonova, O., Sahota, C. S., Buchanan, T., Barr, A. M., MacEwan, G. W., Rauscher, A., Honer, W. G., & Panenka, W. J. (2022). Characterizing traumatic brain injury and Its association with losing stable housing in a community-based sample. The Canadian Journal of Psychiatry, 67(3), 207–215. https://doi.org/10.1177/07067437211000665
  • Tam, S., McKay, A., Sloan, S., & Ponsford, J. (2015). The experience of challenging behaviours following severe TBI: A family perspective. Brain Injury, 29(7-8), 813–821. https://doi.org/10.3109/02699052.2015.1005134
  • Todd, J., Loewy, J., Kelly, G., & Simpson, G. (2004). Managing challenging behaviours: Getting interventions to work in nonspecialised community settings. Brain Impairment, 5(1), 42–52. https://doi.org/10.1375/brim.5.1.42.35398
  • Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  • Toor, G. K., Harris, J. E., Escobar, M., Yoshida, K., Velikonja, D., Rizoli, S., Cusimano, M., Cullen, N., Sokoloff, S., & Colantonio, A. (2016). Long-term health service outcomes among women with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 97(2 Suppl), S54–S63. https://doi.org/10.1016/j.apmr.2015.02.010
  • Turner, B., Fleming, J., Cornwell, P., Worrall, L., Ownsworth, T., Haines, T., Kendall, M., & 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. https://doi.org/10.1080/02699050701651678
  • Watson, C., Rutterford, N. A., Shortland, D., Williamson, N., & Alderman, N. (2001). Reduction of chronic aggressive behaviour 10 years after brain injury. Brain Injury, 15(11), 1003–1015. https://doi.org/10.1080/02699050010022662
  • Williams, W. H., Mewse, A. J., Tonks, J., Mills, S., Burgess, C. N. W., & Cordan, G. (2010). Traumatic brain injury in a prison population: Prevalence and risk for re-offending. Brain Injury, 24(10), 1184–1188. https://doi.org/10.3109/02699052.2010.495697
  • Ylvisaker, M., Jacobs, H. E., & Feeney, T. J. (2003). Positive supports for people who experience behavioral and cognitive disability after brain injury. Journal of Head Trauma Rehabilitation, 18(1), 7–32. https://doi.org/10.1097/00001199-200301000-00005
  • Ylvisaker, M., Turkstra, L., Coehlo, C., Yorkston, K., Kennedy, M., Moore Sohlberg, M., & Avery, J. (2007). Behavioural interventions for children and adults with behaviour disorders after TBI: A systematic review of the evidence. Brain Injury, 21(8), 769–805. https://doi.org/10.1080/02699050701482470
  • Zeiler, K. J., Gomez, A., Mathieu, F., & Zeiler, F. A. (2021). Health determinants among North Americans experiencing homelessness and traumatic brain injury: A scoping review. Neurotrauma Reports, 2(1), 303–321. https://doi.org/10.1089/neur.2021.0010

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