Hostname: page-component-8448b6f56d-t5pn6 Total loading time: 0 Render date: 2024-04-18T04:20:19.643Z Has data issue: false hasContentIssue false
  • English
  • Français

Humanising brain injury rehabilitation: a qualitative study examining humanising approaches to engagement in the context of a storytelling advocacy programme

Published online by Cambridge University Press:  08 October 2021

Kate D’Cruz Open the ORCID record for Kate D’Cruz [Opens in a new window] ,
Jacinta Douglas Open the ORCID record for Jacinta Douglas [Opens in a new window]  and
Tanya Serry
Kate D’Cruz*
Affiliation:
Discipline of Occupational Therapy, La Trobe University, Melbourne, Australia Living with Disability Research Centre, La Trobe University, Melbourne, Australia Summer Foundation, Melbourne, Australia
Jacinta Douglas
Affiliation:
Discipline of Speech Pathology, La Trobe University, Melbourne, Australia Living with Disability Research Centre, La Trobe University, Melbourne, Australia Summer Foundation, Melbourne, Australia
Tanya Serry
Affiliation:
Living with Disability Research Centre, La Trobe University, Melbourne, Australia School of Education, La Trobe University, Melbourne, Australia
*
*Correspondence: Email: k.dcruz@latrobe.edu.au
Get access

Abstract

Objectives:

Building upon the findings of an earlier study that explored the experience and impact of narrative storytelling following acquired brain injury (ABI), this study sought to examine the engagement of storytelling facilitators with storytellers.

Methods:

Transcripts of in-depth interviews conducted with six storytelling facilitators were analysed drawing upon content analysis. The analysis included a process of mapping previously analysed data (D’Cruz et al., 2020b) to a humanising values framework (Galvin & Todres, 2013; Todres et al., 2009).

Results:

The findings of this study provide insights into how facilitators engaged in humanising practice within the context of a storytelling advocacy programme. The facilitator participants ranged in years of facilitation experience from 1 to 11 years, with a mix of professional backgrounds, including health care (3), journalism (1) and community development (2). Analysed facilitator data mapped to each of the eight dimensions of the framework (insiderness, agency, uniqueness, togetherness, sense-making, personal journey, sense of place and embodiment), with a breadth of codes represented in each dimension, revealing the depth of humanisation.

Conclusions:

This study extends our understanding of approaches to engagement with adults living with ABI, demonstrating the humanising potential of storytelling. Furthermore, the findings help us to think about what it means to be human, guiding us to find ways to better partner with and support adults living with brain injury.

Keywords

Narrative storytellingAcquired brain injuryRehabilitationPerson-centred practiceTherapeutic relationships
Type
Original Article
Information
Brain Impairment , Volume 23 , Special Issue 1: Humanising Connections: Bringing people together in rehabilitation , March 2022 , pp. 91 - 103
Copyright
© The Author(s), 2021. Published by Cambridge University Press on behalf of Australasian Society for the Study of Brain Impairment

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

Adler, J. M. (2012). Living into the story: agency and coherence in a longitudinal study of narrative identity development and mental health over the course of psychotherapy Journal of Personality and Social Psychology, 102(2), 67–89. doi: 10.1037/a0025289 CrossRefGoogle Scholar
Bright, F. A. S., Kayes, N. M., Cummins, C., Worrall, L., & McPherson, K. M. (2017). Co-constructing engagement in stroke rehabilitation: a qualitative study exploring how practitioner engagement can influence patient engagement Clinical Rehabilitation, 31(10), 1396–1405. doi: 10.1177/0269215517694678 CrossRefGoogle ScholarPubMed
Charmaz, K. (2014). constructing grounded theory (2nd ed.). London: Sage Publications.Google Scholar
Charon, R. (2006). narative medicine: honoring the story of illness. New York: Oxford University Press.Google Scholar
D’Cruz, K., Douglas, J., & Serry, T. (2020b). Sharing stories of lived experience: a qualitative analysis of the intersection of experiences between storytellers with acquired brain injury and storytelling facilitators British Journal of Occupational Therapy, 83(9), 576–584. doi: 10.1177/0308022619898085 CrossRefGoogle Scholar
D’Cruz, K., Douglas, J., & Serry, T. (2020a). Narrative storytelling as both an advocacy tool and a therapeutic process: perspectives of adult storytellers with acquired brain injury Neuropsychological Rehabilitation, 30(8), 1409–1429. doi: 10.1080/09602011.2019.1586733 CrossRefGoogle Scholar
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), 985–1004. doi: 10.1080/09602011.2017.1361844 CrossRefGoogle Scholar
D’Cruz, K. (2019). narrative storytelling following acquired brain injury: creating connections and exchanging wisdom through sharing stories of lived experience [Doctoral dissertation]. La Trobe University.Google Scholar
D’Cruz, K., Howie, L., & Lentin, P. (2016). Client-centred practice: perspectives of persons with a traumatic brain injury Scandinavian Journal of Occupational Therapy, 23(1), 30–38. doi: 10.3109/11038128.2015.1057521 CrossRefGoogle Scholar
Doig, E., Fleming, J., & Kuipers, P. (2008). Achieving optimal functional outcomes in community-based rehabilitation following acquired brain injury: a qualitative investigation of therapists’ perspectives British Journal of Occupational Therapy, 71(9), 360–370. doi: 10.1177/030802260807100902 CrossRefGoogle Scholar
Douglas, J. (2020). Loss of friendship following traumatic brain injury: a model grounded in the experience of adults with severe injury Neuropsychological Rehabilitation, 30(7), 1277–1302. doi: 10.1080/09602011.2019.1574589 CrossRefGoogle Scholar
Douglas, J. (2013). Conceptualizing self and maintaining social connection following severe traumatic brain injury Brain Injury, 27(1), 60–74. doi: 10.3109/02699052.2012.722254 CrossRefGoogle ScholarPubMed
Franklin, M., Willis, K., Lewis, S., Rogers, A., & Smith, L. (2021). Between knowing and doing person-centredness: a qualitative examination of health professionals’ perceptions of roles in self-management support Health, 25(3), 339–356. doi: 10.1177/1363459319889087 CrossRefGoogle ScholarPubMed
Galvin, K., & Todres, L. (2013). Caring and well-being. a lifeworld approach. London: Routledge.CrossRefGoogle Scholar
Gergen, M. M., & Gergen, K. J. (2014). The social construction of narrative accounts. In Gergen, K. J. & Gergen, M. M. (Eds.), historical social psychology. UK: Psychology Press, 173–189.Google Scholar
Hersh, D. (2015). Hopeless, sorry, hopeless" Co-constructing narratives of care with people who have aphasia post-stroke Topics in Language Disorders, 35(3), 219–236. doi: 10.1097/TLD.0000000000000060 CrossRefGoogle Scholar
Liamputtong, P. (2019). qualitative research methods (5th ed.). Australia & New Zealand: Oxford University Press.Google Scholar
Levack, W., Kayes, N. M., & Fadyl, J. K. (2010). Experience of recovery and outcome following traumatic brain injury: a metsynthesis of qualitative research Disability & Rehabilitation, 32(12), 986–999. doi: 10.3109/09638281003775394 CrossRefGoogle ScholarPubMed
McAdams, D. P. (2001). The psychology of life stories Review of General Psychology, 5(2), 100–122. doi: 10.1037/1089-2680.5.2.100 CrossRefGoogle Scholar
Nochi, M. (2000). Reconstructing self-narratives in coping with traumatic brain injury Social Science & Medicine, 51(12), 1795–1804. doi: 10.1016/S0277-9536(00)00111-8 CrossRefGoogle Scholar
Ownsworth, T. (2014). Self-identity after brain injury. London and New York: Psychology Press.CrossRefGoogle ScholarPubMed
Ponsford, J., Sloan, S., & Snow, P. (2013). traumatic brain injury: rehabilitation for everyday adaptive living. UK: Psychology Press.Google Scholar
Stagg, K., Douglas, J., & Iacono, T. (2019). A scoping review of the working alliance in acquired brain injury rehabilitation Disability and rehabilitation, 41(4), 489–497. doi: 10.1080/09638288.2017.1396366 CrossRefGoogle ScholarPubMed
Terry, G., & Kayes, N. (2019). Person-centred care in neurorehabilitation: a secondary analysis Disability & Rehabilitation, 42(16), 2334–2234. doi: 10.1080/09638288.2018.1561952 CrossRefGoogle ScholarPubMed
Todres, L., Galvin, K., & Holloway, I. (2009). The humanization of healthcare: a value framework for qualitative research International Journal of Qualitative Studies on Health and Well-being, 4, 68–77. doi: 10.1080/17482620802646204 CrossRefGoogle Scholar
Turner-Stokes, L., Pick, A., Nair, A., Disler, P. B., & Wade (2015). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age Cochrane Database of Systematic Reviews, 29(: CD004170), 66. doi: 10.1002/14651858.CD004170.pub3.Accessed 2021-05-24.Google Scholar
Winkler, D., Holgate, N., Sloan, S., & Callaway, L. (2012). Evaluation of quality of life outcomes of the younger people in residential aged care initiative in Victoria. Melbourne: Summer Foundation Ltd.Google Scholar