The impact of cognitive-communication difficulties following traumatic brain injury on the family; a qualitative, focus group study

References

• King NS, Tyerman A. Neuropsychological presentation and treatment of head injury and traumatic brain damage. In: Halligan PW, Kischka U, Marshall JC, editors. Handbook of clinical neuropsychology (pp 487-505).Oxford (UK): Oxford University Press; 2003.
   Google Scholar
• Marsh NV, Kersel DA, Havill JH, Sleigh JW. 1998. Caregiver burden at 1 year following severe traumatic brain injury. Brain Inj. 12(12):1045–59. doi:10.1080/026990598121954
   PubMed Web of Science ®Google Scholar
• Ponsford J, Schonberger M. Family functioning and emotional state two and five years after traumatic brain injury. J Int Neuropsycholl Soc. 2010;16(2):306–17. doi:10.1017/s1355617709991342. England.
   PubMed Web of Science ®Google Scholar
• Brooks N, Campsie L, Symington C, Beattie A, McKinlay W. 1986. The five year outcome of severe blunt head injury: a relative’s view. J Neurol Neurosurg Psychiatry. 49(7):764–70. doi:10.1136/jnnp.49.7.764
   PubMed Web of Science ®Google Scholar
• Douglas JM, Spella FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Inj. 2000;14(1):71–88. England. 0269-9052. doi:10.1080/026990500120943. .
   PubMed Web of Science ®Google Scholar
• Thomsen IV. Late outcome of very severe blunt head trauma: a 10-15 year second follow-up. J Neurol Neurosurg Psychiatry. 1984;47(3):260–68. 0022-3050. England. doi:10.1136/jnnp.47.3.260.
   PubMed Web of Science ®Google Scholar
• Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R.A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. J Head Trauma Rehabil. 2007;22(1):14–25.doi:10.1097/00001199-200701000-00002.
   PubMed Web of Science ®Google Scholar
• Gan C, Campbell KA, Gemeinhardt M, McFadden GT. 2006. Predictors of family system functioning after brain injury. Brain Inj. 20(6):587–600. doi:10.1080/02699050600743725
   PubMed Web of Science ®Google Scholar
• Man DWK. Family caregivers’ reactions and coping for persons with brain injury. Brain Inj. 2002;16(12):1025–37. doi:10.1080/0269905021000010087. 0269-9052.
   PubMed Web of Science ®Google Scholar
• Ramkumar NA, Elliot TR, Arango-Lasprilla JC, Kreutzer J. Family caregiving of persons following neurotrauma: issues in research, service and policy. NeuroRehabilitation. 2010;27(1):105–12. doi:10.3233/nre-2010-0585. 1878-6448.
   PubMed Web of Science ®Google Scholar
• Minnes P, Graffi S, Nolte ML, Carlson P, Harrick L. 2002. Coping and stress in Canadian family caregivers of persons with traumatic brain injuries. Brain Inj. 14(8):737–48. doi:10.1080/026990500413768
   Web of Science ®Google Scholar
• Kolakowsky-Hayner SA, Kinshore R. Caregiver functioning after traumatic injury. Neurorehabilitation. 1999;13:27–33.doi:10.3233/NRE-1999-13105.
   Web of Science ®Google Scholar
• Vangel SJ, Rapport LJ, Hanks RA. Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury. J Head Trauma Rehabil. 2011;26(1):20–29. doi:10.1097/htr.0b013e318204a70d. 1550-509X.
   PubMed Web of Science ®Google Scholar
• Winstanley J, Simpson G, Tate R, Myles B. 2006. Early Indicators and Contributors to Psychological Distress in Relatives During Rehabilitation Following Severe Traumatic Brain Injury: findings From the Brain Injury Outcomes Study. J Head Trauma Rehabil. 21(6):453–66. doi:10.1097/00001199-200611000-00001
   PubMed Web of Science ®Google Scholar
• Anderson MI, Parmenter TR, Mok M. 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 Inj. 2002;16(9):743–57. doi:10.1080/02699050210128906. 0269-9052.
   PubMed Web of Science ®Google Scholar
• Struchen AM, Pappadis RM, Sander MA, Burrows SC, Myszka AK. 2011. Examining the contribution of social communication abilities and affective/behavioral functioning to social integration outcomes for adults with traumatic brain injury. J Head Trauma Rehabil. 26(1):30–42. doi:10.1097/HTR.0b013e3182048f7c
   PubMed Web of Science ®Google Scholar
• Marini A, Zettin M, Galetto V Cognitive correlates of narrative impairment in moderate traumatic brain injury. Neuropsychologia England, 2014; 64:282–88, 0028-3932. doi:10.1016/j.neuropsychologia.2014.09.042
   PubMed Web of Science ®Google Scholar
• Coelho CA. Management of discourse deficits following traumatic brain injury: progress, caveats, and needs. Semin Speech Lang. 2007 May;28(2):122–35. doi:10.1055/s-2007-970570. 0734-0478.
   PubMedGoogle Scholar
• Rispoli MJ, Machalicek W, Lang R. Communication interventions for individuals with acquired brain injury. Dev Neurorehabil. 2010;13(2):141–51. doi:10.3109/17518420903468464. 1751-8431.
   PubMed Web of Science ®Google Scholar
• Bond F, Godfrey HPD. Conversation with traumatically brain injured individuals: a controlled study of behavioural changes and their impact. Brain Inj. 1997;11(5):319–30. doi:10.1080/026990597123476. England.
   PubMed Web of Science ®Google Scholar
• McDonald S, Togher L, Code C. Social and communication disorders following traumatic brain injury. 2ed, London (NY): Psychology Press, Taylor & Francis Group, 2014. doi:10.4324/9780203557198. ISBN 1848721358;1848721293;9781848721357;9781848721296.
   Google Scholar
• Snow P, Douglas J, Ponsford J. Conversational assessment following traumatic brain injury: a comparison across two control groups. Brain Inj. 1997;11(6):409–29. England. 0269-9052 U6-080_026990597123403. doi:10.1080/026990597123403. .
   PubMed Web of Science ®Google Scholar
• Spence SE, Godfrey HP, Knight RG, Bishara SN. 1993. First impressions count: a controlled investigation of social skill following closed head injury. Br J Clin Psychol. 32(3):309–18. doi:10.1111/j.2044-8260.1993.tb01061.x
   PubMedGoogle Scholar
• Douglas JM. Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Inj. 2013;27(1):60–74. England. 0269-9052. doi:10.3109/02699052.2012.722254.
   PubMed Web of Science ®Google Scholar
• Elbourn E, Togher L, Kenny B, Power E. 2017. Strengthening the quality of longitudinal research into cognitive-communication recovery after traumatic brain injury: a systematic review. Int J Speech Lang Pathol. 19(1):1–16. doi:10.1080/17549507.2016.1193896
   PubMed Web of Science ®Google Scholar
• Elbourn E, Kenny B, Power E, Honan C, McDonald S, Tate R, Holland A, MacWhinney B, Togher L. 2019. Discourse recovery after severe traumatic brain injury: exploring the first year. Brain Inj. 33(2):143–59. doi:10.1080/02699052.2018.1539246
   PubMed Web of Science ®Google Scholar
• Tran S, Kenny B, Power E, Tate R, McDonald S, Heard R, Togher L. 2018. Cognitive-communication and psychosocial functioning 12 months after severe traumatic brain injury. Brain Inj. 32(13–14):1700–11. doi:10.1080/02699052.2018.1537006
   PubMed Web of Science ®Google Scholar
• Wearne T, Osborne-Crowley K, Rosenberg H, Dethier M, McDonald S. 2019. Emotion recognition depends on subjective emotional experience and not on facial expressivity: evidence from traumatic brain injury. Brain Inj. 33(1):12–22. doi:10.1080/02699052.2018.1531300
   Web of Science ®Google Scholar
• Cassel A, McDonald S, Kelly M, Togher L. 2019. Learning from the minds of others: A review of social cognition treatments and their relevance to traumatic brain injury. Neuropsychol Rehabil. 29(1):22–55. doi:10.1080/09602011.2016.1257435
   PubMed Web of Science ®Google Scholar
• Saint-Jean M, Allain P, Besnard JA. 2019. A sociocognitive approach to social problem solving in patients with traumatic brain injury: a pilot study. Brain Inj. 33(1):40–47. doi:10.1080/02699052.2018.1531306
   PubMed Web of Science ®Google Scholar
• Allain P, Togher L, Social Cognition AP. 2019. Traumatic Brain Injury: current knowledge. Brain Inj. 33(1):1–3. doi:10.1080/02699052.2018.1533143
   PubMed Web of Science ®Google Scholar
• Witol AD, Sander AM, Kreutzer JS. A longitudinal analysis of family needs following traumatic brain injury. NeuroRehabilitation. 1996;7(3):175–87. doi:10.1016/1053-8135(96)00190-4. 1053-8135.
   PubMed Web of Science ®Google Scholar
• Serio CD, Kreutzer JS, Witol AD. Family needs after traumatic brain injury: a factor analytic study of the family needs questionnaire. Brain Inj. 1997;11(1):1–9. doi:10.1080/026990597123764. 0269-9052.
   PubMed Web of Science ®Google Scholar
• Moules S, Chandler BJ. A study of the health and social needs of carers of traumatically brain injured individuals served by one community rehabilitation team. Brain Inj. 1999;13(12):983–93. doi:10.1080/026990599120990. 0269-9052.
   PubMed Web of Science ®Google Scholar
• Kolakowsky-Hayner SA, Miner KD, Kreutzer JS. Long-term life quality and family needs after traumatic brain injury. J Head Trauma Rehabil. 2001;16(4):374–85. doi:10.1097/00001199-200108000-00007. 0885-9701.
   PubMed Web of Science ®Google Scholar
• Stebbins P, Leung P.Changing family needs after brain injury. J Rehabil. 1998;64(4):15–22.
   Web of Science ®Google Scholar
• O’Callaghan AM, McAllister M, Wilson L. Experiences of care: perspectives of carers of adults with traumatic brain injury. Int J Speech Lang Pathol. 2011;13(3):218–26. doi:10.3109/17549507.2011.549240. 1754-9515.
   PubMed Web of Science ®Google Scholar
• Dillahunt-Aspillaga C, Jorgensen-Smith T, Ehlke S, Sosinski M, Monroe D, Thor J, Krueger F. 2013. Traumatic brain injury: unmet support needs of caregivers and families in Florida. PLoS One. 8(12):e82896. doi:10.1371/journal.pone.0082896
   PubMed Web of Science ®Google Scholar
• Whiffin CJ, Ellis-Hill C, Bailey C, Jarrett N, Hutchinson PJ. We are not the same people we used to be: an exploration of family biographical narratives and identity change following traumatic brain injury. Neuropsychol Rehabil. 2017;1–17. doi:10.1080/09602011.2017.1387577.
   Web of Science ®Google Scholar
• Townshend J, Norman A. The secondary impact of traumatic brain injury: an interpretative phenomenological analysis of the experiences of family and friends. The Family J. 2018;26(1):77–85. 1066-4807. Los Angeles, CA. doi:10.1177/1066480717752905.
   Web of Science ®Google 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 England. 33(4):401–11. doi:10.1080/02699052.2019.1566967
   PubMed Web of Science ®Google Scholar
• Leith KH, Phillips L, Sample PL. 2004. Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience. Brain Inj. 18(12):1191–208. doi:10.1080/02699050410001719943
   PubMed Web of Science ®Google Scholar
• Eliacin J, Fortney S, Rattray NA, Kean J. 2018. Access to health services for moderate to severe TBI in Indiana: patient and caregiver perspectives. Brain Inj. 32(12):1510–17. doi:10.1080/02699052.2018.1499964
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Levert MJ. 2012. The close relatives of people who have had a traumatic brain injury and their special needs. Brain Inj. 26(9):1084–97. doi:10.1080/02699052.2018.1499964
   PubMed Web of Science ®Google Scholar
• Mosconi P, Taricco M, Bergamini M, Fazzi LB, Colombo C, Patrucco V, Corte M, Giobe V, Magnarella MR, Sallemi G, et al. Family burden after severe brain injury: the Italian experience with families and volunteer associations. The Patient: Patient-Centered Outcomes Research. 2011;4(1):55–65. doi:10.2165/11535550-000000000-00000.
   Web of Science ®Google Scholar
• Mbakile-Mahlanza L, Manderson L, Downing M, Ponsford J. 2017. Family caregiving of individuals with traumatic brain injury in Botswana. Disabil Rehabil. 39(6):559–67. doi:10.3109/09638288.2016.1152605
   PubMed Web of Science ®Google Scholar
• Kreitzer N, Kurowski BG, Bakas T. 2018. Systematic review of Caregiver and Dyad interventions after adult traumatic brain injury. Arch Phys Med Rehabil. 99(11):2342–54. doi:10.1016/j.apmr.2018.04.016
   PubMed Web of Science ®Google Scholar
• Hart T, Driver S, Sander A, Pappadis M, Dams-O’Connor K, Bocage C, Hinkens E, Dahdah MN, Cai X. Traumatic brain injury education for adult patients and families: a scoping review. Brain Inj. 2018 [2018];32(11):1295–306. doi:10.1080/02699052.2018.1493226.
   PubMed Web of Science ®Google Scholar
• Hanks RA, Rapport LJ, Wertheimer J, Koviak C. 2012. Randomized controlled trial of peer mentoring for individuals with traumatic brain injury and their significant others. Arch Phys Med Rehabil. 93(8):1297. doi:10.1016/j.apmr.2012.04.027
   PubMed Web of Science ®Google Scholar
• Bellon M, Sando S, Crocker R, Farnden J, Duras M. 2017. Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia. Health Soc Care Community. 25(1):204–14. doi:10.1111/hsc.12294
   PubMed Web of Science ®Google Scholar
• Powell JM, Fraser R, Brockway JA, Temkin N, Bell KR, Telehealth A. 2016. Approach to Caregiver self-management following traumatic brain injury: a randomized controlled trial. J Head Trauma Rehabil. 31(3):180–90. doi:10.1097/HTR.0000000000000167
   PubMed Web of Science ®Google Scholar
• Rivera PA, Elliot JR, Berry TW, Grant JS. 2008. Problem-solving training for family caregivers of persons with traumatic brain injuries: a randomized controlled trial. Arch Phys Med Rehabil. 89(5):931. doi:10.1016/j.apmr.2007.12.032
   PubMed Web of Science ®Google Scholar
• Bell KR, Brockway JA, Hart T, Whyte J, Sherer M, Fraser RT, Temkin NR, Dikmen SS.Scheduled telephone intervention for traumatic brain injury: a multicenter randomized controlled trial. Arch Phys Med Rehabil. 2011;92(10):1552.doi:10.1016/j.apmr.2011.05.018.
   PubMed Web of Science ®Google Scholar
• Niemeier JP, Kreutzer JS, Marwitz JP, Sima AP, Godwin EE. 2019. Randomized controlled pilot study of a manualized intervention for caregivers of patients with traumatic brain injury in inpatient rehabilitation. Arch Phys Med Rehabil. 100(4):S65–S75. doi:10.1016/j.apmr.2018.07.422
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Marwitz JP, Sima AP, Godwin EE. 2015. Efficacy of the brain injury family intervention: impact on family members. J Head Trauma Rehabil. 30(4):249–60. doi:10.1097/HTR.0000000000000144
   PubMed Web of Science ®Google Scholar
• Livingston MG, Brooks DN, Bond MR. 1985. Three months after severe head injury: psychiatric and social impact on relatives. J Neurol Neurosurg Psychiatry. 48(9):870–75. doi:10.1136/jnnp.48.9.870
   PubMed Web of Science ®Google Scholar
• Perlesz A, Kinsella G, Crowe S. 2000. Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers. J Head Trauma Rehabil. 15(3):909–29. doi:10.1097/00001199-200006000-00005
   PubMed Web of Science ®Google Scholar
• Ponsford J, Olver J, Ponsford M, Nelms R. 2003. Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury. 17(6):453–68. doi:10.1080/0269905031000070143
   PubMed Web of Science ®Google Scholar
• Verhaeghe S, Defloor T, Grypdonck M. 2005. Stress and coping among families of patients with traumatic brain injury: a review of the literature. J Clin Nurs. 14(8):1004–12. doi:10.1111/j.1365-2702.2005.01126.x
   PubMed Web of Science ®Google Scholar
• Kratz AL, Sander AM, Brickell TA, Lange RT, Carlozzi NE. 2017. Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychol Rehabil. 27(1):16–37. doi:10.1080/09602011.2015.1051056
   PubMed Web of Science ®Google Scholar
• Togher SL, Wiseman-Hakes SC, Douglas SJ, Stergiou-Kita SM, Ponsford SJ, Teasell SR, Bayley M, Turkstra LS. ‘INCOG recommendations for management of cognition following traumatic brain injury, part IV: cognitive communication’. J Head Trauma Rehabil. 2014;29(4):353–68.doi:10.1097/HTR.0000000000000071.
   PubMed Web of Science ®Google Scholar
• Wiseman-Hakes SC, Ryu H, Lightfoot D, Kukreja G, Colantonio A, Matheson FI.‘Examining the efficacy of communication partner training for improving communication interactions and outcomes for individuals with traumatic brain injury a systematic review’. Arch Rehabil Res ClinTransl. 2020;2(1):100036.doi:10.1016/j.arrct.2019.100036.
   PubMedGoogle Scholar
• Behn N, Francis J, Togher L, Hatch E, Moss B, Hilari K, Description and effectiveness of communication partner training in TBI: a systematic review. J Head Trauma Rehabil 2020; Publish Ahead of Print. doi:10.1097/HTR.0000000000000580.
   PubMed Web of Science ®Google Scholar
• Togher L, Power E, Rietdijk R, McDonald S, Tate R. 2012. An exploration of participant experience of a communication training program for people with traumatic brain injury and their communication partners. Disabil Rehabil. 34(18):1562–74. doi:10.3109/09638288.2012.656788
   PubMed Web of Science ®Google Scholar
• Grayson L, Brady MC, Togher L, Ali M. A survey of cognitive-communication difficulties following TBI: are families receiving the training and support they need? Int J Lang Commun Disord. 2020;55:712–23. doi:10.1111/1460-6984.12555.
   PubMed Web of Science ®Google Scholar
• Russell WR, Smith A. 1961. Post-traumatic amnesia in closed head injury. Arch Neurol. 5(1):4–17. doi:10.1001/archneur.1961.00450130006002
   PubMedGoogle Scholar
• Braun V, Clarke V. 2006. Using thematic analysis in psychology. Qual Res Psychol. 3(2):77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Tong A, Sainsbury P, Craig J. 2007. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 19(6):349–57. doi:10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Plosker R, Chang JA. 2014. Solution- focused therapy group designed for caregivers of stroke survivors. J Syst Ther. 33(2):35–49. doi:10.1521/jsyt.2014.33.2.35
   Google Scholar