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Research Articles

Stigma following acquired brain injury and spinal cord injury: relationship to psychological distress and community integration in the first-year post-discharge

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Pages 1796-1806 | Received 07 Nov 2022, Accepted 14 Apr 2023, Published online: 02 May 2023

References

  • Barclay L, Robins L, Migliorini C, et al. Community integration programs and interventions for people with spinal cord injury: a scoping review. Disabil Rehabil. 2021;43(26):3845–3855.
  • Kreuter M, Sullivan M, Dahllof AG, et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord. 1998;36(4):252–261.
  • Takada K, Sashika H, Wakabayashi H, et al. Social participation and quality-of-life of patients with traumatic brain injury living in the community: a mixed methods study. Brain Inj. 2016;30(13–14):1590–1598.
  • Williams G, Willmott C. Higher levels of mobility are associated with greater societal participation and better quality-of-life. Brain Inj. 2012;26(9):1065–1071.
  • Charlifue S, Gerhart K, McKinley WO, et al. Community integration in spinal cord injury of long duration. NRE. 2004;19(2):91–101.
  • Jumisko E, Lexell J, Söderberg S. The meaning of living with traumatic brain injury in people with moderate or severe traumatic brain injury. J Neurosci Nurs. 2005;37(1):42–50.
  • Mahooti F, Raheb G, Alipour F, et al. Psychosocial challenges of social reintegration for people with spinal cord injury: a qualitative study. Spinal Cord. 2020;58(10):1119–1127.
  • Monden KR, Philippus A, MacIntyre B, et al. The impact of stigma on psychosocial outcomes following spinal cord injury: a cross-sectional analysis of stigma-mediated relationships. Rehabil Psychol. 2021;66(2):202–212.
  • Pascoe EA, Smart Richman L. Perceived discrimination and health: a meta-analytic review. Psychol Bull. 2009;135(4):531–554.
  • Heinemann AW, Magasi S, Hammel J, et al. Environmental factors item development for persons with stroke, traumatic brain injury, and spinal cord injury. Arch Phys Med Rehabil. 2015;96(4):589–595.
  • McColl MA, Carlson P, Johnston J, et al. The definition of community integration: perspectives of people with brain injuries. Brain Inj. 1998;12(1):15–30.
  • Becker H. OUTSIDERS: studies in the sociology of deviance. New York: The Free Press; 1963.
  • Stigma GE. Notes on the management of spoiled identity. London: Penguin Books; 1990.
  • Fleming J, Nalder E, Alves-Stein S, et al. The effect of environmental barriers on community integration for individuals with moderate to severe traumatic brain injury. J Head Trauma Rehabil. 2014;29(2):125–135.
  • Kisala PA, Tulsky DS, Pace N, et al. Measuring stigma after spinal cord injury: development and psychometric characteristics of the SCI-QOL stigma item bank and short form. J Spinal Cord Med. 2015;38(3):386–396.
  • Manns PJ, Chad KE. Components of quality of life for persons with a quadriplegic and paraplegic spinal cord injury. Qual Health Res. 2001;11(6):795–811.
  • Poritz JMP, Harik LM, Vos L, et al. Perceived stigma and its association with participation following traumatic brain injury. Stigma and Health. 2019;4(1):107–115.
  • Conneeley AL. Social integration following traumatic brain injury and rehabilitation. Br J Occup Therapy. 2002;65(8):356–362.
  • Hellem I, Førland G, Eide K, et al. Addressing uncertainty and stigma in social relations related to hidden dysfunctions following acquired brain injury. Scand J Disabil Res. 2018;20(1):152–161.
  • Nochi M. Struggling with the labeled self: people with traumatic brain injuries in social settings. Qualitative Health Res. 1998;10:81–87.
  • Villa D, Causer H, Riley GA. Experiences that challenge self-identity following traumatic brain injury: a meta-synthesis of qualitative research. Disabil Rehabil. 2021;43(23):3298–3314.
  • Zhu M, Zhou H, Zhang W, et al. Stigma experienced by chinese patients with stroke during inpatient rehabilitation and its correlated factors: a cross-sectional study. Top Stroke Rehabil. 2019; Jul26(5):342–348.
  • Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–529.
  • Chi P, Li X, Zhao J, et al. Vicious circle of perceived stigma, enacted stigma and depressive symptoms among children affected by HIV/AIDS in China. AIDS Behav. 2014;18(6):1054–1062.
  • Tesfaw G, Kibru B, Ayano G. Prevalence and factors associated with higher levels of perceived stigma among people with schizophrenia Addis Ababa, Ethiopia. Int J Ment Health Syst. 2020;14:19.
  • Deng C, Lu Q, Yang L, et al. Factors associated with stigma in community-dwelling stroke survivors in China: a cross-sectional study. J Neurol Sci. 2019;407:116459.
  • Hu R, Wang X, Liu Z, et al. Stigma, depression, and post-traumatic growth among chinese stroke survivors: a longitudinal study examining patterns and correlations. Top Stroke Rehabil. 2022;29(1):16–29.
  • Hagger BF, Riley GA. The social consequences of stigma-related self-concealment after acquired brain injury. Neuropsychol Rehabil. 2019;29(7):1129–1148.
  • Riley GA, Brennan AJ, Powell T. Threat appraisal and avoidance after traumatic brain injury: why and how often are activities avoided? Brain Inj. 2004;18(9):871–888.
  • Curvis W, Simpson J, Hampson N. Social anxiety following traumatic brain injury: an exploration of associated factors. Neuropsychol Rehabil. 2018;28(4):527–547.
  • Sarfo FS, Nichols M, Qanungo S, et al. Stroke-related stigma among west africans: patterns and predictors. J Neurol Sci. 2017; Apr 15375:270–274.
  • Ditchman N, Sheehan L, Rafajko S, et al. Predictors of social integration for individuals with brain injury: an application of the ICF model. Brain Inj. 2016;30(13–14):1581–1589.
  • Lu Q, Wang D, Fu L, et al. The effect of stigma on social participation in community-dwelling chinese patients with stroke sequelae: a cross-sectional study. Clin Rehabil. 2022; 36(3):407–414.
  • Gordon WA, Brown M, Sliwinski M, et al. The enigma of "hidden" traumatic brain injury. J Head Trauma Rehabil. 1998;13(6):39–56.
  • Ono M, Ownsworth T, Walters B. Preliminary investigation of misconceptions and expectations of the effects of traumatic brain injury and symptom reporting. Brain Inj. 2011;25(2):237–249.
  • Borg DN, Fleming J, Bon JJ, et al. The influence of personal factors, unmet need and service obstacles on the relationship between health service use and outcome after brain injury. BMC Health Serv Res. 2022;22(1):445.
  • Grey N, Kennedy P. The functional independence measure: a comparative study of clinician and self ratings. Paraplegia. 1993;31(7):457–461.
  • Stineman MG, Shea JA, Jette A, et al. The functional independence measure: tests of scaling assumptions, structure, and reliability across 20 diverse impairment categories. Arch Phys Med Rehabil. 1996;77(11):1101–1108.
  • Cella D, Lai JS, Nowinski CJ, et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurol. 2012; 78(23):1860–1867.
  • Rao D, Choi SW, Victorson D, et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res. 2009;18(5):585–595.
  • Gershon RC, Lai JS, Bode R, et al. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2012;21(3):475–486.
  • Migliorini C, Tonge B, Taleporos G. Spinal cord injury and mental health. Aust N Z J Psychiatry. 2008;42(4):309–314.
  • Dahm J, Wong D, Ponsford J. Validity of the depression anxiety stress scales in assessing depression and anxiety following traumatic brain injury. J Affect Disord. 2013;151(1):392–396.
  • Lovibond S, Lovibond P. Depression anxiety stress scale. Sydney: Psychology Foundation of Australia; 1995.
  • De Wolf A, Lane-Brown A, Tate RL, et al. Measuring community integration after spinal cord injury: validation of the sydney psychosocial reintegration scale and community integration measure. Qual Life Res. 2010;19(8):1185–1193.
  • Pershouse KJ, Barker RN, Kendall MB, et al. Investigating changes in quality of life and function along the lifespan for people with spinal cord injury. Arch Phys Med Rehabil. 2012;93(3):413–419.
  • Millis SR, Meachen SJ, Griffen JA, et al. Rasch analysis of the community integration measure in persons with traumatic brain injury. Arch Phys Med Rehabil. 2014;95(4):734–740.
  • Riley GA, Hagger BF. Disclosure of a stigmatized identity: a qualitative study of the reasons why people choose to tell or not tell others about their traumatic brain injury. Brain Inj. 2015;29(12):1480–1489.
  • Barker DJ, Reid D, Cott C. Acceptance and meanings of wheelchair use in senior stroke survivors. Am J Occup Ther. 2004;58(2):221–230.
  • Geytenbeek M, Fleming J, Doig E, et al. The occurrence of early impaired self-awareness after traumatic brain injury and its relationship with emotional distress and psychosocial functioning. Brain Inj. 2017;31(13–14):1791–1798.
  • Levack WM, Kayes NM, Fadyl JK. Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disabil Rehabil. 2010;32(12):986–999.
  • Martin R, Levack WM, Sinnott KA. Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis. Disabil Rehabil. 2015;37(14):1234–1241.
  • Jones JM, Haslam SA, Jetten J, et al. That which doesn’t kill us can make us stronger (and more satisfied with life): the contribution of personal and social changes to well-being after acquired brain injury. Psychol Health. 2011;26(3):353–369.
  • Hoepner JK, Yingst H, Harder B, et al. I never thought I would be an international speaker … but I am": an interpretive qualitative analysis of experiences of a project-based advocacy intervention. Neuropsychol Rehabil. 2022;32(8):2077–2101.
  • Ownsworth T. Psychological adjustment and self-identity changes after brain injury. Self-Identity after brain inj. Hove (UK): Psychology Press; 2014. p. 65–88.
  • Barclay L, Lalor A. Investigating the challenges and benefits of engaging in peer support via videoconferencing for people with spinal cord injury. IJERPH. 2022;19(8):4585.
  • Beauchamp MR, Scarlett LJ, Ruissen GR, et al. Peer mentoring of adults with spinal cord injury: a transformational leadership perspective. Disabil Rehabil. 2016;38(19):1884–1892.
  • Behn N, Marshall J, Togher L, et al. Feasibility and initial efficacy of project-based treatment for people with ABI. Int J Lang Commun Disord. 2019;54(3):465–478.
  • Divanoglou A, Georgiou M. Perceived effectiveness and mechanisms of community peer-based programmes for spinal cord injuries-a systematic review of qualitative findings. Spinal Cord. 2017;55(3):225–234.
  • Feeney T, Capo M. Making meaning: the use of project-based supports for individuals with brain injury. J Behav and Neurosci Res. 2010;8(1):70–80.
  • Leeson R, Collins M, Douglas J. Finding goal focus with people with severe traumatic brain injury in a person-centered multi-component community connection program (M-ComConnect). Front Rehabil Sci. 2021;2:786445.
  • Heijnders M, Van Der Meij S. The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychol Health Med. 2006; Aug11(3):353–363.
  • Krahn TM. Traumatic Brain Injury and the Use of Documentary Narrative Media to Redress Social Stigma. Handbook of Neuroethics 2015. p. 1501–1524.