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How does a narrative understanding of change in families post brain injury help us to humanise our professional practice?

Published online by Cambridge University Press:  17 September 2021

Charlotte J Whiffin*
Affiliation:
Senior Lecturer in Health and Social Care Practice, College of Health, Psychology and Social Care, University of Derby, Twitter username: @CJWhiffin
Caroline Ellis-Hill
Affiliation:
Senior Lecturer, Faculty of Health and Social Sciences, Bournemouth University
*
*Corresponding author. Email: c.whiffin@derby.ac.UK
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Abstract

In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.

Type
Clinical Practice: Current Opinion
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

Bingley, A. F., Thomas, C., Brown, J., Reeve, J., & Payne, S. (2008). Developing narrative research in supportive and palliative care: the focus on illness narratives. Palliative Medicine, 22(5), 653658. doi: 10.1177/0269216308089842 CrossRefGoogle ScholarPubMed
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), 205220. doi: 10.1017/BrImp.2015.22 CrossRefGoogle Scholar
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), 156164. doi: 10.1097/JNN.0b013e3182135bb2 CrossRefGoogle ScholarPubMed
Brooks, N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1987). The effects of severe head injury on patient and relative within seven years of injury. Journal of Head Trauma Rehabilitation, 2(3), 113.CrossRefGoogle Scholar
Butera-Prinzi, F., Charles, N., & Story, K. (2014). Narrative family therapy and group work for families living with acquired brain injury. Australian and New Zealand Journal of Family Therapy, 35(1), 8199. doi: 10.1002/anzf.1046 CrossRefGoogle Scholar
Carson, P. (1993). Investing in the comeback: parent’s experience following traumatic brain injury. Journal of Neuroscience Nursing, 25(3), 165173. doi: 10.1097/01376517-199306000-00006 CrossRefGoogle ScholarPubMed
D’Cruz, K., Douglas, J., & Serry, T. (2019). Personal narrative approaches in rehabilitation following traumatic brain injury: A synthesis of qualitative research. Neuropsychological Rehabilitation, 29(7), 9851004. doi: 10.1080/09602011.2017.1361844 CrossRefGoogle Scholar
Daisley, A., Pragnell, S., & Seed, R. (2014). Helping children create positive stories about a parent’s brain injury. In Weatherhead, S. & Todd, D. (Eds.), Narrative approaches to brain injury. London: Karnac.Google Scholar
Degeneffe, C. E., & Olney, M. F. (2010). 'We are the forgotten victims': Perspectives of adult siblings of persons with traumatic brain injury. Brain Injury, 24(12), 14161427. doi: 10.3109/02699052.2010.514317 CrossRefGoogle Scholar
Easton, A., & Atkin, K. (2014). Understanding narratives: a beacon of hope or Pandora’s box? In Weatherhead, S. & Todd, D. (Eds.), Narrative Approaches to Brain Injury. London: Routledge.Google Scholar
Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2), 150159. doi: 10.1080/09638280701195462 CrossRefGoogle ScholarPubMed
Galvin, K. T., Pound, C., Cowdell, F., Ellis-Hill, C., Sloan, C., Brooks, S., & Ersser, S. J. (2020). A lifeworld theory-led action research process for humanizing services: improving “what matters” to older people to enhance humanly sensitive care. Int J Qual Stud Health Well-being, 15(1), 1817275. doi: 10.1080/17482631.2020.1817275 CrossRefGoogle ScholarPubMed
Galvin, K. T., & Todres, L. (2009). Embodying nursing openheartedness: an existential perspective. J Holist Nurs, 27(2), 141149. doi: 10.1177/0898010108323303 CrossRefGoogle Scholar
Galvin, K. T., & Todres, L. (2013). Caring and well-being : a lifeworld approach. London: Routledge.CrossRefGoogle Scholar
Godwin, E., Chappell, B., & Kreutzer, J. (2014). Relationships after TBI: a grounded research study. Brain Injury, 28(4), 398413. doi: 10.3109/02699052.2014.880514 CrossRefGoogle ScholarPubMed
Gordon, C. (2020). Humanising Relational Knowing An Appreciative Action Research Study on Relationship-centred Practice on Stroke Units (PhD). Bournemouth University.Google Scholar
Harris, D., & Stuart, A. D. (2006). Adolescents’ experience of a parental traumatic brain injury. Health SA Gesondheid, 11(4), 4656.CrossRefGoogle Scholar
Hawkins, L. G., Eggleston, D., & Brown, C. C. (2018). Utilizing a Narrative Therapy Approach with Couples Who Have Experienced a Traumatic Brain Injury to Increase Intimacy. Contemporary Family Therapy, 41(3), 304315. doi: 10.1007/s10591-018-9484-8 CrossRefGoogle 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 Inj, 33(4), 401411. doi: 10.1080/02699052.2019.1566967 CrossRefGoogle ScholarPubMed
Kauffman, J. (2002). Loss of the assumptive world : a theory of traumatic loss. New York: Brunner-Routledge.Google Scholar
Knox, L., Douglas, J. M., & Bigby, C. (2015). 'The biggest thing is trying to live for two people': Spousal experiences of supporting decision-making participation for partners with TBI. Brain Injury, 29(6), 745757. doi: 10.3109/02699052.2015.1004753 CrossRefGoogle ScholarPubMed
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), 1637. doi: 10.1080/09602011.2015.1051056 CrossRefGoogle ScholarPubMed
Landau, J., & Hissett, J. (2008). Mild traumatic brain injury: Impact on identity and ambiguous loss in the family. Families, Systems, & Health, 26(1), 6985. doi: 10.1037/1091-7527.26.1.69 CrossRefGoogle Scholar
Landsman, I. S. (2002). Crises of Meaning in Trauma and Loss. In Kauffman, J. (Ed.), Loss of the assumptive world: a theory of traumatic loss (pp. 1330). London: Brunner-Routledge.Google Scholar
Leathem, J., Heath, E., & Woolley, C. (1996). Relatives’ perceptions of role change, social support and stress after traumatic brain injury. Brain Injury, 10(1), 2738. doi: 10.1080/026990596124692 Google ScholarPubMed
Lefebvre, H., Cloutier, G., & Josee Levert, M. (2008). Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22(7–8), 535543. doi: 10.1080/02699050802158243 CrossRefGoogle ScholarPubMed
Mäkelä, P. (2017). 'they brought you back to the fact you’re not the same': Sense of self after traumatic brain injury. Subjectivity. doi: 10.1057/s41286-017-0036-8 CrossRefGoogle Scholar
Nochi, M. (1998). “Loss of self” in the narratives of people with traumatic brain injuries: a qualitative analysis. Social Science & Medicine, 46(7), 869878. doi: 10.1016/s0277-9536(97)00211-6 CrossRefGoogle ScholarPubMed
Oddy, M., Humphrey, M., & Uttley, D. (1978). Stresses upon the relatives of head-injured patients. The British Journal of Psychiatry, 133, 507513.CrossRefGoogle ScholarPubMed
Ownsworth, T. (2014). Self-identity after brain injury. London: Psychology Press.CrossRefGoogle ScholarPubMed
Ownsworth, T., & Fleming, J. (2011). Growth Through Loss After Brain Injury. Brain Impairment, 12(2), 7981. doi: 10.1375/brim.12.2.79 CrossRefGoogle Scholar
Ownsworth, T., & Haslam, C. (2016). Impact of rehabilitation on self-concept following traumatic brain injury: An exploratory systematic review of intervention methodology and efficacy. Neuropsychological Rehabilitation, 26(1), 135. doi: 10.1080/09602011.2014.977924 CrossRefGoogle ScholarPubMed
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), 813821. doi: 10.3109/02699052.2015.1005134 CrossRefGoogle ScholarPubMed
Todres, L. (2008). Being with that: the relevance of embodied understanding for practice. Qualitative Health Research, 18(11), 15661573. doi: 10.1177/1049732308324249 CrossRefGoogle ScholarPubMed
Tyerman, A., & Humphrey, M. (1984). Changes in self-concept following severe head injury. The International Journal of Rehabilitation Research, 7(1), 1123. doi: 10.1097/00004356-198403000-00002 CrossRefGoogle Scholar
Weatherhead, S., & Todd, D. (2014). Narrative approaches to brain injury. London: Karnack.Google Scholar
Weddell, R. A., & Leggett, J. A. (2006). Factors triggering relatives’ judgements of personality change after traumatic brain injury. Brain Injury, 20(12), 12211234. doi: 10.1080/02699050601049783 CrossRefGoogle ScholarPubMed
Whiffin, C. J., Bailey, C., Ellis-Hill, C., Jarrett, N., & Hutchinson, P. J. (2015). Narratives of family transition during the first year post-head injury: perspectives of the non-injured members. Journal of Advanced Nursing, 71(4), 849859. doi: 10.1111/jan.12551 CrossRefGoogle ScholarPubMed
Whiffin, C. J., Ellis-Hill, C., Bailey, C., Jarrett, N., & Hutchinson, P. J. (2019). We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury. Neuropsychological Rehabilitation, 29(8), 12561272. doi: 10.1080/09602011.2017.1387577 CrossRefGoogle ScholarPubMed
Whiffin, C. J., Gracey, F., & Ellis-Hill, C. (2021). The experience of families following traumatic brain injury in adult populations: A meta-synthesis of narrative structures. International Journal of Nursing Studies, 123, 104043. doi: 10.1016/j.ijnurstu.2021.104043 CrossRefGoogle Scholar
Williams, G. (1984). The genesis of chronic illness: narrative re-construction. Sociology of Health & Illness, 6(2), 175200. doi: 10.1111/1467-9566.ep10778250 CrossRefGoogle ScholarPubMed
Wongvatunyu, S., & Porter, E. J. (2008). Helping young adult children with traumatic brain injury: the life-world of mothers. Qualitative Health Research, 18(8), 10621074. doi: 10.1177/1049732308320111 CrossRefGoogle ScholarPubMed
Yeates, G. N., Gracey, F., & McGrath, J. C. (2008). A biopsychosocial deconstruction of “personality change” following acquired brain injury. Neuropsychological Rehabilitation, 18(5–6), 566589. doi: 10.1080/09602010802151532 CrossRefGoogle ScholarPubMed