Register      Login
Brain Impairment Brain Impairment Society
Journal of the Australasian Society for the Study of Brain Impairment
RESEARCH ARTICLE (Open Access)

An exploration of families’ lived experiences of attention-related communication difficulties following traumatic brain injury

Maegan VanSolkema https://orcid.org/0000-0002-6705-3022 A B * , Clare M. McCann https://orcid.org/0000-0003-1221-608X A , Laura Dixon A , Jemma Horne A , Suzanne Barker-Collo https://orcid.org/0000-0002-8659-0202 C and Allison Foster https://orcid.org/0000-0001-8779-6088 D
+ Author Affiliations
- Author Affiliations

A School of Psychology (Speech Science), University of Auckland, Building 507, 28 Park Avenue, Grafton, Auckland 1023, New Zealand. Email: c.mccann@auckland.ac.nz, laurasiandixon@gmail.com, jemmahorne@icloud.com

B ABI Rehabilitation New Zealand Ltd, Ranui, Auckland, New Zealand.

C School of Psychology, University of Auckland, Science Centre Building 302, 23 Symonds Street, Auckland 1010, New Zealand. Email: s.barker-collo@auckland.ac.nz

D Foster Medical Communications Ltd., 23 Harvest Drive, Henderson, Auckland 0612, New Zealand. Email: allison.foster@gmail.com

* Correspondence to: m.vansolkema@auckland.ac.nz

Handling Editor: Petrea Cornwell

Brain Impairment 25, IB23087 https://doi.org/10.1071/IB23087
Submitted: 8 June 2023  Accepted: 2 July 2023  Published: 19 January 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

To explore families’ experiences of living with someone who has attention and communication difficulties following a traumatic brain injury (TBI). Attention-related communication difficulties are common following TBI, but to date there is limited research into the effects on the family with respect to this cognitive communication difficulty.

Methods

Recruitment of family members was completed through TBI community rehabilitation services. Inclusion criteria were that the family member needed to be living with an individual who had sustained a moderate to severe TBI at least 6 months prior to the study and that they had self-reported attention and communication difficulties. A semi-structured interview was completed. Qualitative interview data underwent reflexive thematic analysis with an inductive approach.

Results

Eleven family members (including wives, mothers, a father, and a daughter) were interviewed. Two themes were generated that explored the lived experiences of the family. The first, adjustment to the new normal, outlines the changes and adaptations the families made to live with and support their loved one’s attention and communication difficulties. The second theme, the load the family carries, reviews the two polarities of facilitation and support along with the burden the family endures following the injury.

Conclusion

The themes outline how attention-related communication difficulties following TBI bring additional burden and challenges for families for years following the injury. Families report adapting their social lives and learning to implement specific strategies to improve their person’s ability to interact and participate in conversations. Clinical implications are discussed.

Keywords: adjustment, attention, cognitive communication, family, lived experience, qualitative, TBI.

References

American Speech-language Hearing Association (1983) Committee on language: Definition of language. Asha 24, 44.
| Google Scholar |

American Speech-language Hearing Association (2007) Scope of practice in speech-language pathology. Available at www.asha.org/policy

Anderson MI, Parmenter TR, 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.
| Crossref | Google Scholar | PubMed |

Bal M, Müller N, Nelson R (2014) ‘Handbook of qualitative research in communication disorders.’ (Psychology Press)

Behn N, Francis J, Togher L, Hatch E, Moss B, Hilari K (2021) Description and effectiveness of communication partner training in TBI: A systematic review. Journal of Head Trauma Rehabilitation 36(1), 56-71.
| Crossref | Google Scholar | PubMed |

Blais MC, Boisvert JM (2005) Psychological and marital adjustment in couples following a traumatic brain injury (TBI): A critical review. Brain Injury 19(14), 1223-1235.
| Crossref | Google Scholar | PubMed |

Bodley-Scott SEM, Riley GA (2015) How partners experience personality change after traumatic brain injury – Its impact on their emotions and their relationship. Brain Impairment 16(3), 205-220.
| Crossref | Google Scholar |

Bracy CA, Douglas JM (2005) Marital dyad perceptions of injured partners’ communication following severe traumatic brain injury. Brain Impairment 6(1), 1-12.
| Crossref | Google Scholar |

Braun V, Clarke V (2021) One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology 18(3), 328-352.
| Crossref | Google Scholar |

Braun V, Clarke V (2022) ‘Thematic Analysis A Pratical Guide.’ (Sage Publications Ltd.)

College of Audiologists and Speech-Language Pathologists of Ontario (2015) ‘Practice Standards and Guidelines for Acquired Cognitive Communication Disorders.’ Available at www.caslpo.com

Dawes K, Carlino A, van den Berg M, Killington M (2022) Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions. Disability and Rehabilitation 44(2), 282-290.
| Crossref | Google Scholar | PubMed |

Durie M (1984) “Te taha hinengaro”: An integrated approach to mental health. Community Mental Health in New Zealand 1(1), 4-11.
| Google Scholar |

Finn JA, Klocksieben FA, Smith AN, Bernstein J, O’Neil-Pirozzi TM, Kreutzer JS, Sander AM, Dreer LE, Niemeier JP, Cotner BA, Nakase-Richardson R (2022) Family needs after traumatic brain injury: A VA TBI model systems study. Journal of Head Trauma Rehabilitation 37(6), 327-337.
| Crossref | Google Scholar | PubMed |

Grayson L, Brady MC, Togher L, Ali M (2020) A survey of cognitive–communication difficulties following TBI: Are families receiving the training and support they need? International Journal of Language & Communication Disorders 55(5), 712-723.
| Crossref | Google Scholar | PubMed |

Grayson L, Brady MC, Togher L, Ali M (2021) The impact of cognitive-communication difficulties following traumatic brain injury on the family; a qualitative, focus group study. Brain Injury 35(1), 15-25.
| Crossref | Google Scholar | PubMed |

Harris JKJ, Godfrey HPD, Partridge FM, Knight RG (2001) Caregiver depression following traumatic brain injury (TBI): A consequence of adverse effects on family members? Brain Injury 15(3), 223-238.
| Crossref | Google Scholar | PubMed |

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.
| Crossref | Google Scholar | PubMed |

Kreutzer JS, Marwitz JH, Godwin EE, Arango-Lasprilla JC (2010) Practical approaches to effective family intervention after brain injury. Journal of Head Trauma Rehabilitation 25(2), 113-120.
| Crossref | Google Scholar | PubMed |

Lond BJ, Williamson IR (2022) Acceptance, grief and adaptation amongst caregivers of partners with acquired brain injury: an interpretative phenomenological enquiry. Disability and Rehabilitation 44(11), 2285-2294.
| Crossref | Google Scholar | PubMed |

Menon DK, Schwab K, Wright DW, Maas AI (2010) Position statement: Definition of traumatic brain injury. Archives of Physical Medicine and Rehabilitation 91(11), 1637-1640.
| Crossref | Google Scholar | PubMed |

Norman RS, Swan AA, Jenkins A, Ballard M, Amuan M, Pugh MJ (2021) Updating and refining prevalence rates of traumatic brain injury–related communication disorders among post-9/11 veterans: A chronic effects of neurotrauma consortium study. Perspectives of the ASHA Special Interest Groups 6, 1060-1072.
| Crossref | Google Scholar |

O’Shannessy E, Reeder S, Vishwanath S, Hill S, Perta A, Jolliffe L, Morarty J, Hunter P, Lannin NA (2022) Mixed methods study to understand the experiences of adults with acquired brain injury and their family members who receive specialised rehabilitation. Brain Impairment 24, 39-53.
| Crossref | Google Scholar |

Ponsford J, Schönberger M (2010) Family functioning and emotional state two and five years after traumatic brain injury. Journal of the International Neuropsychological Society 16(2), 306-317.
| Crossref | Google Scholar | PubMed |

Ponsford J, Bayley M, Wiseman-Hakes C, Togher L, Velikonja D, McIntyre A, Janzen S, Tate R (2014a) INCOG recommendations for management of cognition following traumatic brain injury, Part II: Attention and information processing speed. Journal of Head Trauma Rehabilitation 29(4), 321-337.
| Crossref | Google Scholar |

Ponsford J, Downing M, Olver J, Ponsford M, Acher R, Carty M, Spitz G (2014b) Longitudinal follow-up of patients with traumatic brain injury: Outcome at two, five, and ten years post-injury. Journal of Neurotrauma 31(1), 64-77.
| Crossref | Google Scholar |

Sander AM, Maestas KL, Clark AN, Havins WN (2013) Predictors of emotional distress in family caregivers of persons with traumatic brain injury: A systematic review. Brain Impairment 14(1), 113-129.
| Crossref | Google Scholar |

Simpson GK, Anderson MI, Daher M, Jones KF, Morey P (2021) Testing a model of resilience in family members of relatives with traumatic brain injury vs spinal cord injury: Multigroup analysis. Archives of Physical Medicine and Rehabilitation 102(12), 2325-2334.
| Crossref | Google Scholar | PubMed |

Spina S, Ziviani J, Nixon J (2005) Children, brain injury and the resiliency model of family adaptation. Brain Impairment 6(1), 33-44.
| Crossref | Google Scholar |

Stierwalt JAG, Murray LL (2002) Attentional impairment following traumatic brain injury. Seminars in Speech and Language 23(2), 129-138.
| Crossref | Google Scholar | PubMed |

Togher L, McDonald S, Tate R, Rietdijk R, Power E (2016) The effectiveness of social communication partner training for adults with severe chronic TBI and their families using a measure of perceived communication ability. Neurorehabilitation 38(3), 243-255.
| Crossref | Google Scholar | PubMed |

VanSolkema M, McCann C, Barker-Collo S, Foster A (2020) Attention and communication following TBI: Making the connection through a meta-narrative systematic review. Neuropsychology Review 30(3), 345-361.
| Crossref | Google Scholar | PubMed |

VanSolkema M, McCann C, Barker-Collo S, Foster A (2022a) Outcomes of attention-related communication deficits following traumatic brain injury: Perspectives of international health professionals. Brain Injury 36(3), 406-414.
| Crossref | Google Scholar |

VanSolkema M, McCann C, Barker-Collo S, Foster A (2022b) The treatment journey of attention-related communication difficulties following traumatic brain injury: Perspectives of international health professionals. Neuropsychological Rehabilitation
| Crossref | Google Scholar |

Whiffin CJ, Ellis-Hill C, Bailey C, Jarrett N, Hutchinson PJ (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), 1256-1272.
| Crossref | Google Scholar | PubMed |

Whiffin CJ, 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.
| Crossref | Google Scholar | PubMed |