Who am I now? A scoping review on identity changes in post-stroke aphasia

References

• Berns PEG, Jünger N, Boxum E, et al. Logopedische richtlijn ‘Diagnostiek en behandeling van afasie bij volwassenen’ [Speech pathology guideline ‘Diagnosis and treatment of aphasia in adults’]. Woerden: Ned Ver Logopedie Foniatrie; 2015. Dutch.
   Google Scholar
• Strong K, Shadden BB. The power of story in identity renegotiation: clinical approaches to supporting persons living with aphasia. Perspect ASHA Special Interest Gr. 2020;5:371–383.
   Google Scholar
• Burr V. Social constructionism. New York (NY): Routledge; 2015.
   Google Scholar
• Ricoeur P. Oneself as another. Kathleen Blamey, Trans. Chigago (IL): University of Chicago Press; 1992.
   Google Scholar
• Ganzevoort R. Narratieve benaderingen in de praktische theologie [Narrative approaches in practical theology]. Tijdschr Humanis. 2011;12(47):61–70. Dutch.
   Google Scholar
• Tajfel H, Turner JC. The social identity theory of intergroup behavior. In: Jost JT, Sidanius J, editors. Political psychology. London: Psychology Press; 2004. p. 276–293.
   Google Scholar
• Haslam SA, Jetten J, Postmes T, et al. Social identity, health and well-being: an emerging agenda for applied psychology. Appl Psychol Int Re. 2009;58(1):1–23. doi: 10.1111/j.1464-0597.2008.00379.x.
   Web of Science ®Google Scholar
• Shadden BB, Hagstrom F, Koski PR. Neurogenic communication disorders. Life stories and the narrative self. San Diego (CA): Plural Publishing; 2008.
   Google Scholar
• Taubner H, Hallén M, Wengelin Å. Still the same? Self-identity dilemmas when living with post-stroke aphasia in a digitalised society. Aphasiology. 2020;34(3):300–318. doi: 10.1080/02687038.2019.1594151.
   Web of Science ®Google Scholar
• Ellis-Hill C. New world, new rules: life narratives and changes in self-concept in the first year after stroke [dissertation]. Southampton: University of Southampton; 1998.
   Google Scholar
• Ellis-Hill CS, Payne S, Ward C. Self-body split: issues of identity in physical recovery following a stroke. Disabil Rehabilit. 2000;22(16):725–733.
   PubMed Web of Science ®Google Scholar
• Hinojosa R, Boylstein C, Rittman M, et al. Constructions of continuity after stroke. Symb Int. 2008;31(2):205–224.
   Web of Science ®Google Scholar
• Kitzmüller G, Häggström T, Asplund K. Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke. Med Health Care Philos. 2013;16(1):19–29. doi: 10.1007/s11019-012-9403-y.
   PubMed Web of Science ®Google Scholar
• Pallesen H. Body, coping and self-identity. A qualitative 5-year follow-up study of stroke. Disabil Rehabilit. 2014;36(3):232–241.
   PubMed Web of Science ®Google Scholar
• Corsten S, Schimpf E, Konradi J, et al. The participants’ perspective: how biographic-narrative intervention influences identity negotiation and quality of life in aphasia. Int J Lang Commun Disord. 2015;50(6):788–800. doi: 10.1111/1460-6984.12173.
   PubMed Web of Science ®Google Scholar
• Kirkevold M, Bronken BA, Martinsen R, et al. Promoting psychosocial well-being following a stroke: developing a theoretically and empirically sound complex intervention. Int J Nurs Stud. 2012;49(4):386–397. doi: 10.1016/j.ijnurstu.2011.10.006.
   PubMed Web of Science ®Google Scholar
• Parr S. Living with severe aphasia: tracking social exclusion. Aphasiology. 2007;21(1):98–123. doi: 10.1080/02687030600798337.
   Web of Science ®Google Scholar
• Chun HYY, Ford A, Kutlubaev MA, et al. Depression, anxiety, and suicide after stroke: a narrative review of the best available evidence. Stroke. 2022;53(4):1402–1410. doi: 10.1161/STROKEAHA.121.035499.
   PubMed Web of Science ®Google Scholar
• Morris R, Eccles A, Ryan B, et al. Prevalence of anxiety in people with aphasia after stroke. Aphasiology. 2017;31(12):1410–1415. doi: 10.1080/02687038.2017.1304633.
   Web of Science ®Google Scholar
• Zanella C, Laures-Gore J, Dotson VM, et al. Incidence of post-stroke depression symptoms and potential risk factors in adults with aphasia in a comprehensive stroke center. Top Stroke Rehabilit. 2022;30(5):1–11.
   Web of Science ®Google Scholar
• McGurk R, Kneebone II, Pit ten Cate IM. “Sometimes we get it wrong but we keep on trying”: a cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia. Aphasiology. 2011;25(12):1507–1522. doi: 10.1080/02687038.2011.599528.
   Web of Science ®Google Scholar
• Pompon RH, Mach H. Characterizations of resilience in poststroke aphasia: a scoping review and considerations for treatment and research. Top Lang Disord. 2022;42(3):236–251. doi: 10.1097/TLD.0000000000000285.
   Web of Science ®Google Scholar
• Gilham S, Clark L. NHS improvement – stroke psychological care after stroke improving stroke services for people with cognitive and mood disorders. Leicester: NHSI; 2011.
   Google Scholar
• Lanctôt KL, Lindsay MP, Smith EE, et al. Canadian stroke best practice recommendations: mood, cognition and fatigue following stroke, update 2019. Int J Stroke. 2020;15(6):668–688. doi: 10.1177/1747493019847334.
   PubMed Web of Science ®Google Scholar
• Informme.org.au/Guidelines [Internet]. Melbourne (Aust): Stroke Foundation; [updated 2023 Jul 28; cited 2023 Aug 15]. Available from: https:///#/guideline/WE8wOn/section/nyQ6Vn
   Google Scholar
• Strokeguideline.org [Internet]. London (UK): SSNAP; [updated 2023 Apr 4; cited 2023 Aug 15]. Available from: https://www.strokeguideline.org/app/uploads/2023/04/NCGS-2023_Rehabilitation-and-recovery.pdf
   Google Scholar
• Kneebone II. Stepped psychological care after stroke. Disabil Rehabilit. 2016;18(38):1836–1843.
   Google Scholar
• Baker C, Worrall L, Rose M, et al. ‘It was really dark’: the experiences and preferences of people with aphasia to manage mood changes and depression. Aphasiology. 2020;34(1):19–46. doi: 10.1080/02687038.2019.1673304.
   Google Scholar
• Ellis-Hill C, Payne S, Ward C. Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disabil Rehabilit. 2008;30:150–159.
   PubMed Web of Science ®Google Scholar
• Baker C, Worrall L, Rose M, et al. Stroke health professionals’ management of depression after post-stroke aphasia: a qualitative study. Disabil Rehabilit. 2021;43:217–228.
   PubMed Web of Science ®Google Scholar
• Armstrong E, Ulatowska H. Making stories: evaluative language and the aphasia experience. Aphasiology. 2007;21(6-8):763–774. doi: 10.1080/02687030701192364.
   Web of Science ®Google Scholar
• Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8:19–32.
   Google Scholar
• Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Br Med J. 2021;71:372.
   Google Scholar
• Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Int Med. 2018;169(7):467–473.
   PubMed Web of Science ®Google Scholar
• James T, Harde A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(1):1–10.
   Google Scholar
• Spencer L, Ritchie J, O’Connor W, et al. Analysis: practices, principles and processes. In: Ritchie L, Lewis J, McNaughton N, et al., editors. Qualitative research practice: a guide for social science students and researchers. 2nd ed. London: SAGE; 2014. p. 199–218.
   Google Scholar
• Rethlefsen ML, Page MJ. PRISMA 2020 and PRISMA-S: common questions on tracking records and the flow diagram. J Med Libr Assoc. 2022;110(2):253–257. doi: 10.5195/jmla.2022.1449.
   PubMed Web of Science ®Google Scholar
• Pound C, Parr S, Lindsay J, et al. Beyond aphasia: therapies for living with communication disability. London: Routledge; 2018.
   Google Scholar
• Shadden BB, Hagstrom F, Koski PR. The self. In: Shadden BB, Hagstrom F, Koski PR, editors. Neurogenic communication disorders. Life stories and the narrative self. San Diego (CA): Plural Publishing; 2008. p. 33–45.
   Google Scholar
• Shadden BB, Hagstrom F, Koski PR. Life stories in aphasia. In: Shadden BB, Hagstrom F, Koski PR, editors. Neurogenic communication disorders. Life stories and the narrative self. San Diego (CA): Plural Publishing; 2008. p. 137–174.
   Google Scholar
• Shadden BB, Agan JP. Renegotiation of identity: the social context of aphasia support groups. Top Language Disord. 2004;24:174–186.
   Web of Science ®Google Scholar
• Shadden B. Aphasia as identity theft: theory and practice. Aphasiology. 2005;19(3-5):211–223. doi: 10.1080/02687930444000697.
   Web of Science ®Google Scholar
• Shadden BB, Hagstrom F. The role of narrative in the life participation approach to aphasia. Top Lang Disord. 2007;27(4):324–338. doi: 10.1097/01.TLD.0000299887.24241.39.
   Web of Science ®Google Scholar
• Shadden BB, Koski PR. Social construction of self for persons with aphasia: when language as a cultural tool is impaired. J M Speech-Lang Pathol. 2007;15:99–106.
   Web of Science ®Google Scholar
• Taylor C. The politics of recognition. In: Gutman A, editor. Multiculturalism. Princeton (NJ): Princeton University Press; 1994. p. 35–73.
   Google Scholar
• Holstein JA, Gubrium JF. The self we live by: narrative identity in a postmodern world. Symbolic Interact. 2000;23:95–115.
   Web of Science ®Google Scholar
• McAdams DP. Personal narratives and the life story. In: John O, Robins RW, Pervin LA, editors. Handbook of personality: theory and research. 3rd ed. New York (NY): Guilford; 2008. p. 242–262.
   Google Scholar
• Frank AW. Letting stories breathe: a socio-narratology. Chicago (IL): University of Chicago Press; 2010.
   Google Scholar
• Giddens A. Modernity and self-identity: self and society in the late modern age. Cambridge (UK): Polity Press; 1991.
   Google Scholar
• Bamberg M. Who am I? Narration and its contribution to self and identity. Theory Psychol. 2011;21:3–24.
   Web of Science ®Google Scholar
• Bruner J. Life as narrative. Soc Res. 1987;54:11–32.
   Web of Science ®Google Scholar
• Musser B, Wilkinson J, Gilbert T, et al. Changes in identity after aphasic stroke: implications for primary care. Int J Fam Med. 2015;2015(1):1–8.
   Google Scholar
• Guerrero-Arias BE, Agudelo-Orozco A, Pava-Ripoll NA. Intersectional identity chronotopes: expanding the disability experience. Dis Soc. 2020;35:1660–1681.
   Web of Science ®Google Scholar
• Norton B. Identity and language learning: gender, ethnicity and educational change. London: Longman Publishing Group; 2000.
   Google Scholar
• Crenshaw K. Demarginalizing the intersections of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. Univ Chicago Legal Forum. 1989;1:139–167.
   Google Scholar
• Simmons-Mackie N, Elman RJ. Negotiation of identity in group therapy for aphasia: the Aphasia Café. Int J Lang Commun Disord. 2010;27(1):1–12.
   Web of Science ®Google Scholar
• Pound C, Parr S, Lindsay J, et al. Beyond aphasia: therapies for living with communication disability. London: Routledge; 2000.
   Google Scholar
• Bronken BA, Kirkevold M, Martinsen R, et al. Psychosocial well-being in persons with aphasia participating in a nursing intervention after stroke. Nurs Res Pract. 2012;49(4):1–14.
   Google Scholar
• Polkinghorne DE. Narrative knowing and the human sciences. New York (NY): Suny Press; 1988.
   Google Scholar
• Zoffmann V. Guided self-determination. A life skills approach developed in difficult type, 1. diabetes. Aarhus: University of Aarhus; 2004.
   Google Scholar
• Bronken BA, Kirkevold M, Martinsen R, et al. The aphasic storyteller: coconstructing stories to promote psychosocial well-being after stroke. Qualitative Health Res. 2012;22:1303–1316.
   PubMed Web of Science ®Google Scholar
• Ricoeur P. Time and narrative. Vol 1. Chicago (IL): University of Chicago Press; 1990.
   Google Scholar
• Bury M. Chronic illness as biographical disruption. Soc Health Illn. 1982;4:167–182.
   PubMedGoogle Scholar
• Bauer JJ, McAdams DP, Pals JL. Narrative identity and eudaimonic well-being. J Happiness Stud. 2008;9(1):81–104. doi: 10.1007/s10902-006-9021-6.
   Web of Science ®Google Scholar
• Strong KA, Lagerwey MD, Shadden BB. More than a story: my life came back to life. Am J Speech-Lang Pathol. 2018;27:464–476.
   PubMed Web of Science ®Google Scholar
• Ricoeur P. Narrative identity. Philos Today. 1991;35(1):73–81. doi: 10.5840/philtoday199135136.
   Web of Science ®Google Scholar
• Hinckley JJ. Finding messages in bottles: living successfully with stroke and aphasia. Top Stroke Rehabilit. 2006;13:25–36.
   PubMed Web of Science ®Google Scholar
• Barrow R. Listening to the voice of living life with aphasia: Anne’s story. Int J Lang Commun Disord. 2008;43:30–46.
   PubMed Web of Science ®Google Scholar
• Somers MR. The narrative constitution of identity: a relational and network approach. Theory Soc. 1994;23:605–649.
   Web of Science ®Google Scholar
• Corker M, French S. Disability discourse. Buckingham: Open University Press; 1999.
   Google Scholar
• Mitchell K, Skirton H, Monrouxe L. Amelioration, regeneration, acquiescent and discordant: an exploration of narrative types and metaphor use in people with aphasia. Disabil Soc. 2011;26:321–335.
   Web of Science ®Google Scholar
• Armstrong E, Hersh D, Hayward C, et al. Living with aphasia: three Indigenous Australian stories. Int J Speech Lang Pathol. 2012;14(3):271–280. doi: 10.3109/17549507.2011.663790.
   PubMed Web of Science ®Google Scholar
• Hinckley JJ. Narrative-based practice in speech-language pathology: stories of a clinical life. San Diego (CA): Plural Publishing; 2008.
   Google Scholar
• Willis SL, Martin M, Rocke C. Longitudinal perspectives on midlife development: stability and change. Eur J Ageing. 2010;7(3):131–134. doi: 10.1007/s10433-010-0162-4.
   Web of Science ®Google Scholar
• Ruijters MPC, Van De Braak EEPM, Draijer HMA, et al. Je binnenste buiten. Over professionele identiteit in organisaties [Your inside out. On professional identity in organizations]. Zeist: Vakmedianet; 2015. Dutch.
   Google Scholar
• Guillemin M. Understanding illness: using drawings as a research method. Qual Health Res. 2004;14(2):272–289.
   PubMed Web of Science ®Google Scholar
• Brinkman R, Cardol M, Neijenhuis K, et al. Wie ben ik nu? Een pilotonderzoek naar identiteitsveranderingen van Lot, een persoon met afasie. [Who am I now? A pilot study on identity changes of Lot, a person with aphasia]. Ned Tijd Logopedie. 2023;95(6):22–29. Dutch.
   Google Scholar
• Corker M. Deaf transitions: images and origins of deaf families, deaf communities, and deaf identities. London: Jessica Kingsley Publishers; 1996.
   Google Scholar