Healthcare perceptions of persons with traumatic brain injuries across providers: shortcomings in the chronic phase of care

References

• Ruet A, Jourdan C, Bayen E, Darnoux E, Sahridj D, Ghout I, Azerad S, Pradat Diehl P, Aegerter P, Charanton J, et al. Employment outcome four years after a severe traumatic brain injury: results of the Paris severe traumatic brain injury study. Disabil Rehabil. 2018;40(18):2200–2207. doi:10.1080/09638288.2017.1327992.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Haslam C. Impact of rehabilitation on self-concept following traumatic brain injury: an exploratory systematic review of intervention methodology and efficacy. Neuropsychol Rehabil. 2016;26(1):1–35. doi:10.1080/09602011.2014.977924.
   PubMed Web of Science ®Google Scholar
• Nochi M. “Loss of self” in the narratives of people with traumatic brain injuries: a qualitative analysis. Social Sci Med. 1998;46(7):869–878. doi:10.1016/s0277-9536(97)00211-6.
   PubMed Web of Science ®Google Scholar
• McLean KC, Pasupathi M, Pals JL. Selves creating stories creating selves: a process model of self-development. Pers Soc Psychol Rev. 2007;11(3):262–278. doi:10.1177/1088868307301034.
   PubMed Web of Science ®Google Scholar
• Ownsworth T. Self-identity after brain injury. East Sussex and New York: Psychology Press; 2014.
   Google Scholar
• Ylvisaker M, McPherson K, Kayes N, Pellett E. Metaphoric identity mapping: facilitating goal setting and engagement in rehabilitation after traumatic brain injury. Neuropsychol Rehabil. 2008;18(5–6):713–41. doi:10.1080/09602010802201832.
   PubMed Web of Science ®Google Scholar
• Gouick J, Gentleman D. The emotional and behavioural consequences of traumatic brain injury. Trauma. 2004;6(4):285–292. doi:10.1191/1460408604ta323oa.
   Google Scholar
• Konrad C, Geburek AJ, Rist F, Blumenroth H, Fischer B, Husstedt I, Arolt V, Schiffbauer H, Lohmann H. Long-term cognitive and emotional consequences of mild traumatic brain injury. Psychol Med. 2011;41(6):1197–1211. doi:10.1017/S0033291710001728.
   PubMed Web of Science ®Google Scholar
• Sample PL, Darragh AR. Perceptions of care access: the experience of rural and urban women following brain injury. Brain Inj. 1998;12(10):855–874. doi:10.1080/026990598122089.
   PubMed Web of Science ®Google Scholar
• Andelic N, Soberg HL, Berntsen S, Sigurdardottir S, Roe C. Self-perceived health care needs and delivery of health care services 5 years after moderate-to-severe traumatic brain injury. Phy Med Rehab. 2014;6(11):1013–21. doi:10.1016/j.pmrj.2014.05.005.
   Google Scholar
• Dams-O’Connor K, Landau A, Hoffman J, St De Lore J. Patient perspectives on quality and access to healthcare after brain injury. Brain Inj. 2018;32(4):431–441. doi:10.1080/02699052.2018.1429024.
   PubMed Web of Science ®Google Scholar
• Hoepner JK, Keegan LC. “I avoid interactions with medical professionals as much as possible Now”: health care experiences of individuals with traumatic brain injuries. Am J Speech Lang Pathol. 2022;1–9. doi:10.1044/2022_AJSLP-22-00103.
   Web of Science ®Google Scholar
• Jourdan C, Bayen E, Vallat-Azouvi C, Ghout I, Darnoux E, Azerad S, Charanton J, Aegerter P, Pradat-Diehl P, Ruet A, et al. Late functional changes post–severe traumatic brain injury are related to community reentry support: results from the PariS-TBI cohort. J Head Trauma Rehabil. 2017;32(5):E26–34. doi:10.1097/HTR.0000000000000276.
   PubMed Web of Science ®Google Scholar
• Manskow US, Arntzen C, Damsgård E, Braine M, Sigurdardottir S, Andelic N, Røe C, Anke A. Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicentre study. BMC Health Serv Res. 2018;18(1):951. doi:10.1186/s12913-018-3773-7.
   PubMed Web of Science ®Google Scholar
• O’Callaghan AM, McAllister L, Wilson L. Experiences of care reported by adults with traumatic brain injury. Int J Speech Lang Pathol. 2010;12(2):107–123. doi:10.3109/17549500903431774.
   PubMed Web of Science ®Google Scholar
• Piccenna L, Lannin NA, Gruen R, Pattuwage L, Bragge P. The experience of discharge for patients with an acquired brain injury from the inpatient to the community setting: a qualitative review. Brain Inj. 2016;30(3):241–251. doi:10.3109/02699052.2015.1113569.
   PubMed Web of Science ®Google Scholar
• Kingsley C, Patel S. Patient-reported outcome measures and patient-reported experience measures. BJA Edu. 2017;17(4):137–144. doi:10.1093/bjaed/mkw060.
   Web of Science ®Google Scholar
• Black N, Varaganum M, Hutchings A. Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Qual Saf. 2014;23(7):534–42. doi:10.1136/bmjqs-2013-002707.
   PubMed Web of Science ®Google Scholar
• Black N (n.d.). PROMs in England Progress and challenges. [cited 2023 July 13]. www.healthcare conferencesuk.co.uk/new/newsfiles/nick-black364.pdf
   Google Scholar
• Weldring T, Smith SM. Article commentary: patient-reported outcomes (pros) and patient-reported outcome measures (PROMs). Health Serv Insights. 2013;6:61–68. doi:10.4137/HSI.S11093.
   PubMedGoogle Scholar
• Mercer SW, Maxwell M, Heaney D, Watt G. The consultation and relational empathy (CARE) measure: development and preliminary validation and reliability of an empathy-based consultation process measure. Fam Pract. 2004;21(6):699–705. doi:10.1093/fampra/cmh621.
   PubMed Web of Science ®Google Scholar
• Turner BJ, Fleming JM, Ownsworth TL, Cornwell PL. The transition from hospital to home for individuals with acquired brain injury: a literature review and research recommendations. Disabil Rehabil. 2008;30(16):1153–76. doi:10.1080/09638280701532854.
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Cloutier G, Josée Levert M. Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Inj. 2008;22(7–8):535–543. doi:10.1080/02699050802158243.
   PubMed Web of Science ®Google Scholar
• Dillman DA, Smyth JD, Christian LM. Internet, phone, mail, and mixed-mode surveys: the tailored design method 4th . Washington, D.C: John Wiley & Sons; 2014.
   Google Scholar
• Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehab. 2002;83(8):1052–1059. doi:10.1053/apmr.2002.34283.
   PubMed Web of Science ®Google Scholar
• Dahl K. Perceptions of post-TBI healthcare experiences by individuals with traumatic brain injury [ Unpublished master’s thesis]. Eau Claire: University of Wisconsin; 2020.
   Google Scholar
• Boateng GO, Neilands TB, Frongillo EA, Melgar-Quiñonez HR, Young SL. Best practices for developing and validating scales for health, social, and behavioral research: a primer. Front Public Health. 2018;11(6):149. doi:10.3389/fpubh.2018.00149.
   Google Scholar
• Hersh D, Armstrong E. Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital. Aphasiology. 2021;35(8):1067–1083. doi:10.1080/02687038.2020.1765304.
   PubMed Web of Science ®Google Scholar
• Hersh D, Worrall L, Banszki F, Bennington C, Pettigrove K, Muftic D, Beesley K, Hession C, Aisthorpe B Discharge planning LEAVING checklist for people with aphasia. https://aphasia.org.au/AAA Australian Aphasia Association; April 2020.
   Google Scholar
• Oyesanya TO, Loflin C, Harris G, Bettger JP. “Just tell me in a simple way”: a qualitative study on opportunities to improve the transition from acute hospital care to home from the perspectives of patients with traumatic brain injury, families, and providers. Clin Rehabil. 2021;35(7):1056–1072. doi:10.1177/0269215520988679.
   PubMed Web of Science ®Google Scholar
• Borgen IM, Røe C, Brunborg C, Tenovuo O, Azouvi P, Dawes H, Majdan M, Ranta J, Rusnak M, Wiegers EJ, et al. Care transitions in the first 6 months following traumatic brain injury: lessons from the CENTER-TBI study. Ann Phys Rehabil Med. 2021;64(6):101458. doi:10.1016/j.rehab.2020.10.009.
   PubMed Web of Science ®Google Scholar
• Kerasidou A. Artificial intelligence and the ongoing need for empathy, compassion and trust in healthcare. Bull World Health Organ. 2020;98(4):245–250. doi:10.2471/BLT.19.237198.
   PubMed Web of Science ®Google Scholar
• Bagnasco A, Pagnucci N, Tolotti A, Rosa F, Torre G, Sasso L. The role of simulation in developing communication and gestural skills in medical students. BMC Med Educ. 2014;14(1):106. doi:10.1186/1472-6920-14-106.
   PubMedGoogle Scholar
• Bagacean C, Cousin I, Ubertini AH, El Yacoubi El Idrissi M, Bordron A, Mercadie L, Garcia LC, Ianotto JC, De Vries P, Berthou C. Simulated patient and role play methodologies for communication skills and empathy training of undergraduate medical students. BMC Med Educ. 2020;20(1):491. doi:10.1186/s12909-020-02401-0.
   PubMed Web of Science ®Google Scholar
• Hersh D. How do people with aphasia view their discharge from therapy? Aphasiology. 2009;23(3):331–350. doi:10.1080/02687030701764220.
   Web of Science ®Google Scholar
• Polich G, Iaccarino MA, Kaptchuk TJ, Morales-Quezada L, Zafonte R. Nocebo effects in concussion: is all that is told beneficial? Am J Phys Med Rehabil. 2020;99(1):71–80. doi:10.1097/PHM.0000000000001290.
   PubMed Web of Science ®Google Scholar