Understanding the experiences of people with Acquired Brain Injury and their interactions with outside services

Tolulope Odumuyiwa


Previous research has focused on Acquired Brain Injury (ABI) regarding the cognitive, behavioural, psychological and social effects, and the outcomes and implications this has had in different areas of people’s lives. However, there has been limited research exploring the existing relationship between individuals with ABI and community service providers. Therefore, the current study’s objective was to understand the experiences that those with ABI have had of community services and to recognise the extent to which they believed that these services understand their difficulties and needs. An interpretative phenomenological approach was used to allow the participants to reflect on the areas in which they believed were most important to their subjective experiences as a person with ABI, family member related to someone with ABI, or as a professional who had interacted with people with ABI in their role. Eight participants were recruited (two professionals, two individuals with ABI and four family members of individuals with ABI) and took part in semi-structured interviews. Five super-ordinate themes were identified following analysis of the transcripts 1) Hidden disabilities, 2) Knowledge and understanding, 3) Impact of ABI, 4) Access to services, and 5) Safeguarding. Several sub-themes within each superordinate theme were also identified. The findings from the study were consistent with previous research literature, and identified areas that could be improved.

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Arbreu, B.C., Zhang, L., Seale, G., Primeau, L., & Jones, J.S. (2002) Interdisciplinary meetings: investigating the collaboration between person with brain injury and treatment teams. Brain Injury, 16, 691-704.

Arciniegas, D.B., & Wortzel, H.S. (2014). Emotional and behavioural dyscontrol after traumatic brain injury. Psychiatric Clinics of North America, 37, 31-53.

Bay, E.H., Blow, A.J., & Yan, X.E. (2012). Interpersonal relatedness and psychological functioning following traumatic brain injury: implications for marital and family therapists. Journal of Marital and Family Therapy, 38, 556-567.

Bay, E.H., Bonnie, M., Williams, R.A., Kirsch, N., & Gillespie, B. (2002). Chronic stress, sense of belonging, and depression among survivors of traumatic brain injury. Journal of Nursing Scholarship, 34, 221-226.

Bay, E.H., Sikorskii, A., & Gao, G.F. (2009). Functional status, chronic stress, and cortisol response after mild-to-moderate traumatic brain injury. Biological Research for Nursing, 10, 213-225.

Braine, M.E. (2011). The experience of living with a family member with challenging behaviour post acquired brain injury. Journal of Neuroscience Nursing, 43, 156-164.

Bruce, E.J., & Schultz, C.L. (2001). Nonfinite loss and grief: a psychoeducational approach. Sydney: Brookes.

Cannuscio, C.C., Jons, C., Kawachi, I., Colditz, G.A., Berkman, L., & Rimm, E. (2002). Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the nurse’s health study. American Journal of Public Health, 92, 1305-1311.

Cierone, K.D., Mott, T., Azulay, J., & Friel, J.C. (2004). Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 94, 1386-1397.

Clements, A. (1997). Mild traumatic brain injury in persons with multiple trauma: the problem of delayed diagnosis. The Journal of Rehabilitation, 63, 14-20.

Collings, C. (2008). That’s not my child anymore! Parental grief after acquired brain injury (ABI): incidence, nature and longevity. The British Journal of Social Work, 38, 1499-1517.

Degeneffe, C.E. (2001). Family caregiving and traumatic brain injury. Health and Social Work, 26, 257-268.

Douglas, J., Bigby, C., Knox, L., & Browning, M. (2015). Factors that underpin the delivery of effective decision-making support for people with cognitive disability. Research and practice in Intellectual and Developmental Disabilities, 2, 37-44.

Farmer, J.E., & Johnson-Gerard, M. (1997). Misconceptions about traumatic brain injury among educators and rehabilitation staff: a comparative study. Rehabilitation Psychology, 42, 273-286.

Flashman, L.A., & McAllister, T.W. (2002). Lack of awareness and its impact in traumatic brain injury. NeuroRehabilitation, 17, 285-296.

Fleming, J., & Strong, J. (1995). Self-awareness of deficits following acquired brain injury: considerations for rehabilitation. British Journal of Occupational Therapy, 58, 55-60

Gilworth, G., Eyres, S., Carey, A., Bhakta, B., & Tennant, A. (2008). Working with a brain injury: personal experiences of returning to work following a mild or moderate brain injury. Journal of Rehabilitation Medicine, 40, 334-339.

Godfrey, H.P.D., Harnett, M.A., Knight, R.G., Marsh, N.V., Kesel, D.A., Partridge, F.M., & Robertson, R.H. (2003). Assessing distress in caregivers of people with a traumatic brain injury (TBI): A psychometric study of the head injured behaviour scaled. Brain Injury, 17, 427-435.

Hawley, C.A., Ward, A.B., Magnay, A.R., Mychalkiw, W. (2004). Return to school after brain injury. Archives of Disease in Childhood, 89, 136-142.

Haywood, S. (2010). The late medical complications of severe acquired brain injury in children – literature review and personal practice. Neurology, 16, 1-7.

Headway. (2015). Acquired brain injury the numbers behind the hidden disability (n.d). Retrieved 15/Feb/17 from: https://www.headway.org.uk/media/2883/acquired-brain-injury-the-numbers-behind-the-hidden-disability.pdf

Hofgren, C., Esbjornnson, E., & Sunnerhagen, K.S. (2010). Return to work after acquired brain injury: facilitators and hindrances observed in a sub-acute rehabilitation setting. Work, 36, 431-439.

Hwang, S.W., Colantonio, A., Chiu, S., Tolomiczenko, G., Kiss, A., Cowan, L., Redelmeier, D.A., & Levinson, W. (2008). The effect of traumatic brain injury on the health of homeless people. Canadian Medical Association Journal, 179, 779-784.

Kelly, G., Brown, S., Todd, J., & Kremer, P. (2008). Challenging behaviour profiles of people with acquired brain injury in community settings. Journal of Brain Injury, 22, 457-470.

King, N.S., & Tyerman, A. (2003). Neuropsychological presentation and treatment of head injury and traumatic brain damage. In P.W. Halligan, U. Kischka & J.C. Marshall (Eds). Handbook of clinical Neuropsychology (pp. 487-505). New York: Oxford University Press.

Konrad, C., Geburek, A.J., Rist, F., Blumenroth, H., Fischer, B., Husstedt, I., Arolt, V., Schiffbauer, H., & Lohmann, H. (2011). Long-term cognitive and emotional consequences of mild traumatic brain injury. Psychological Medicine, 41, 1197-1211.

Kreutzer, J., Kolakowsky-Hayner, S., Demm, S., & Meade, M. (2002). A structured approach to family intervention after brain injury. Journal of Head Trauma Rehabilitation, 17, 349-367.

Langlois, J., Rutland-Brown, W., & Wald, M. (2006). The epidemiology and impact of traumatic brain injury. Journal of Head Trauma Rehabilitation, 21, 375-378.

Laroi, F. (2003). The family systems approach to treating families of persons with brain injury: a potential collaboration between family therapist and brain injury professionals. Brain Injury, 17, 175-187.

Landau, J., & Hissettm J. (2008). Mild traumatic brain injury: impact on identity and ambiguous loss in the family. Families, Systems & Health, 26, 69-85.

Liaset, I.F., & Loras, H. (2016). Perceived factors in return to work after acquired brain injury: a qualitative meta-synthesis. Scandinavian Journal of Occupational Therapy, 23, 446-457.

Linden, M.A., & Boylan, A.M. (2010). ‘To be accepted as normal’: public understanding and misconceptions concerning survivors of brain injury. Brain Injury, 24, 642-650.

Linden, M.A., Braiden, H.J., & Miller, S. (2013). Educational professionals’ understanding of childhood traumatic brain injury. Brain Injury, 27, 92-102.

Maiser, S.F., & Seligman, M.E. (1976). Learned helplessness: theory and evident. Journal of Experimental Psychology: General, 105, 3-46.

Marsh, N.V., Kersel, D.A., Havil, J.H., & Sleigh, J.H. (1998). Caregiver burden at 6 months following severe traumatic brain injury. Brain Injury, 12, 225-238.

Marshall, S., Teasell, R., Bayona, N., & Bayley, M. (2007). Motor impairment rehabilitation post acquired brain injury. Brain Injury, 21, 133-160.

Materne, M., Lundqvist, L.O., & Strandberg, T. (2017). Opportunities and barriers for successful return to work after acquired brain injury: A patient perspective. Work, 56, 125-134.

Morris, K.C. (2009). Psychological distress in carers of head injured individuals: the provision of written information. Brain Injury, 15, 239-254.

Olson-Madden, J.H., Brenner, L.A., Corrigan, J.D., Emrick, C.D., & Britton, P.C. (2012). Substance use and mild traumatic brain injury risk reduction and prevention: a novel model for treatment. Rehabilitation Research and Practice, 12, 1-6.

Redpath, S.J., & Linden, M.A. (2004). Attitude towards behavioural versus organic acquisition of injury. Brain Injury, 18, 861-869.

Rivera, P.A., Elliot, T.R., Berry, J.W., & Grant, J.S. (2008). Problem-solving training for family caregivers of persons with traumatic brain injuries: A randomised controlled trial. Archives of Physical Medicine and Rehabilitation, 89, 931-941.

Rook, K.S. (1984). The negative side of social interaction: impact on psychological well-being. Journal of Personality and Social Psychology, 46, 1097-1108.

Shorland, J., Douglas, J.M. (2010). Understanding the role of communication in maintaining and forming friendships following traumatic brain injury. Brain Injury, 24, 569-580.

Smith, J.A., Flowers, P., Larkin, M. (2009). Interpretative phenomenological analysis. London: Sage

Smith, J.A., & Osborn, M. (2008). Qualitative Psychology: A Practical guide to research methods. London: sage

Stalder-Luthy, F., Messerli-Burgy, N., Hofer, H., Frischknecht, E., Znoj, H., & Barth, J. (2013). Effect of psychological interventions on depressive symptoms in long- term rehabilitation after an acquired brain injury: A systematic review and meta-analysis. Archives Physical Medicine and Rehabilitation, 94, 1386-1397.

Sturge-Jacobs, M. (2002). The experience of living with fibromyalgia: confronting an invisible disability. Research and Theory for Nursing Practice: An international Journal, 16, 19-31.

Trachsel, M., Hermann, H., & Biller-Andorno, N. (2014). Cognitive fluctuations as a challenge for the assessment of decision-making capacity in patients with dementia. American Journal of Alzheimer’s Disease & Other Dementias, 30, 360-363.

Triebel, K.L., Martin, R.C., Novack, T.A., Dreer, L., Turner, C., Pritchard, P.R., Raman, R., & Marson, J.D. (2012). Treatment consent capacity in patients with traumatic brain injury across a range of injury severity. Journal of American Academy of Neurology, 78, 1472-1478.

Turner-Stokes, L., Nair, A., Sedki, I., Disler, P.B., & Wade, D.T. (2005). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database of Systematic Reviews, 2, 2-46.

Wade, S.L., Carey, J., & Wolfe, C.R. (2006). An online family intervention to reduce parental distress following paediatric brain injury. Journal of Consulting and Clinical Psychology, 74, 445-454.

Wade, S.L., Taylor, H.G., Drotar, D., Stancin, T., Yeates, K.O., & Minich, N.M. (2002). A prospective study of long term caregiver and family adaptation following brain injury in children. Journal of Head Trauma Rehabilitation, 17, 96-111.

Salter, K., Foley, N., Jutai, J., Bayley, M., & Teasell. R. (2008). Assessment of community integration following rehabilitation for traumatic brain injury. Brain Injury, 22, 820-835.

Youngson, H.A., & Alderman, N. (1994). Fear of incontinence and its effects on a community-based rehabilitation programme after severe brain injury: Successful remediation of escape behaviour using behaviour modification. Brain Injury, 8, 23-36.


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