“I used to be a storyteller”: the perspectives of people with primary progressive aphasia on the communication needs for themselves and their family members

References

• Bradshaw, C., Atkinson, S., & Doody, O. (2017). Employing a qualitative description approach in health care research. Global Qualitative Nursing Research, 4, 2333393617742282–2333393617742282. https://doi.org/10.1177/2333393617742282
   Web of Science ®Google Scholar
• Caddell, L. S., & Clare, L. (2011). Interventions supporting self and identity in people with dementia: A systematic review. Aging & Mental Health, 15(7), 797–810. https://doi.org/10.1080/13607863.2011.575352
   PubMed Web of Science ®Google Scholar
• Cash, P., & Snider, C. (2014). Investigating design: A comparison of manifest and latent approaches. Design Studies, 35(5), 441–472. https://doi.org/10.1016/j.destud.2014.02.005
   Web of Science ®Google Scholar
• Corsten, S., Schimpf, E. J., Konradi, J., Keilmann, A., & Hardering, F. (2015). The participants’ perspective: How biographic-narrative intervention influences identity negotiation and quality of life in aphasia. International Journal of Language and Communication Disorders, 50(6), 788–800. https://doi.org/10.1111/1460-6984.12173
   PubMed Web of Science ®Google Scholar
• Cotrell, V., & Schultz, R. (1993). The perspective of the patient with Alzheimer’s disease: A neglected dimension of dementia research. The Gerontologist, 33(2), 205–211. https://doi.org/10.1093/geront/33.2.205
   PubMed Web of Science ®Google Scholar
• Davies, K., Howe, T., Small, J., Hsiung, G. R., & McCarron, E. (2024). The communication needs of people with primary progressive aphasia and their family: A scoping review. Aphasiology, 1–25. https://doi.org/10.1080/02687038.2024.2314326
   PubMed Web of Science ®Google Scholar
• Davies, K., Howe, T., Small, J., & Hsiung, G.-Y. (2024). ‘It’s all communication’: Family members’ perspectives on the communication needs for themselves and their relatives with primary progressive aphasia. International Journal of Language & Communication Disorders. https://doi.org/10.1111/1460-6984.13042
   PubMed Web of Science ®Google Scholar
• de la Sablonnière, J., Tastevin, M., Lavoie, M., & Laforce, R. (2021). Longitudinal changes in cognition, behaviours, and functional abilities in the three main variants of primary progressive aphasia: A literature review. Brain Sciences, 11(9), 1209. https://doi.org/10.3390/brainsci11091209
   PubMed Web of Science ®Google Scholar
• DiCicco-Bloom, B., & Crabtree, B. F. (2006). The qualitative research interview. Medical Education, 40(4), 314–321. https://doi.org/10.1111/j.1365-2929.2006.02418.x
   PubMed Web of Science ®Google Scholar
• Douglas, J. T. (2014). Adaptation to early-stage nonfluent/agrammatic variant primary progressive aphasia: A first-person account. American Journal of Alzheimer’s Disease & Other Dementias, 29(4), 289–292. https://doi.org/10.1177/1533317514523669
   PubMed Web of Science ®Google Scholar
• Douglas, J. T. (2021). My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Adaptations and strategies to improve quality of life. Dementia (London, England), 20(3), 936–951. https://doi.org/10.1177/1471301220918344
   PubMedGoogle Scholar
• Douglas, J. T. (2023). My experience of living with nonfluent/agrammatic variant primary progressive aphasia: Challenges, compensatory strategies and adaptations. International Journal of Language and Communication Disorders, 58(2), 542–554. https://doi.org/10.1111/1460-6984.12798
   PubMed Web of Science ®Google Scholar
• Galvin, J. E., Howard, D. H., Denny, S. S., Dickinson, S., & Tatton, N. (2017). The social and economic burden of frontotemporal degeneration. Neurology, 89(20), 2049–2056. https://doi.org/10.1212/WNL.0000000000004614
   PubMed Web of Science ®Google Scholar
• Glogowska, M. (2011). Paradigms, pragmatism and possibilities: Mixed‐methods research in speech and language therapy. International Journal of Language and Communication Disorders, 46(3), 251–260. https://doi.org/10.3109/13682822.2010.507614
   PubMed Web of Science ®Google Scholar
• Gorno-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Cappa, S. F., Ogar, J. M., Rohrer, J. D., Black, S., Boeve, B. F., Manes, F., Drinkers, N. F., Vandenberghe, R., Rascovsky, K., Patterson, K., Miller, B. I., Knopman, D. S., Hodges, J. R., Mesulam, M. M., & Grossman, M. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76(11), 1006–1014. https://doi.org/10.1212/WNL.0b013e31821103e6
   PubMed Web of Science ®Google Scholar
• Graham, J. R., Pereira, S., & Teasell, R. (2011). Aphasia and return to work in younger stroke survivors. Aphasiology, 25(8), 952–960. https://doi.org/10.1080/02687038.2011.563861
   Web of Science ®Google Scholar
• Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. https://doi.org/10.1016/j.nedt.2003.10.001
   PubMed Web of Science ®Google Scholar
• Gray, S., Shepherd, A., & Robertson, J. (2023). Living with a diagnosis of frontotemporal dementia: An interpretative phenomenological analysis. Dementia (London, England), 22(3), 514–532. https://doi.org/10.1177/14713012221148527
   PubMedGoogle Scholar
• Hardy, C. J. D., Taylor–Rubin, C., Taylor, B. Harding, E., Gonzalez, A. S., Jiang, J., Thompson, L., Kingma, R., Chokesuwattanaskul, A., Walker, F., Barker, S., Brotherhood, E., Waddington, C., Wood, O., Zimmermann, N., Kupeli, N., Yong, K. X. X., Camic, P. M., Stott, J., Warren, J. D., (2024). Symptom–led staging for semantic and non–fluent/agrammatic variants of primary progressive aphasia. Alzheimer’s … Dementia, 20(1), 195–210. https://doi.org/10.1002/alz.13415
   PubMed Web of Science ®Google Scholar
• Ho, T., Whitworth, A., Hersh, D., & Cartwright, J. (2023). “They are dealing with people’s lives”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia. International Journal of Speech Language Pathology, 25(3), 449–461. https://doi.org/10.1080/17549507.2023.2208311
   PubMed Web of Science ®Google Scholar
• Jokel, R., & Meltzer, J. (2017). Group intervention for individuals with primary progressive aphasia and their spouses: Who comes first? Journal of Communication Disorders, 66, 51–64. https://doi.org/10.1016/j.jcomdis.2017.04.002
   PubMed Web of Science ®Google Scholar
• Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816–830. https://doi.org/10.1080/02687039808249575
   Web of Science ®Google Scholar
• Laurie, K., Foster, M. M., Borg, D. N., & Gustafsson, L. (2023). Perceived service adequacy and unmet need after discharge from brain injury rehabilitation. In Disability and Rehabilitation , Ahead-of-Print(ahead-of-print) (pp. 1–10). https://doi.org/10.1080/09638288.2022.2123054
   Google Scholar
• Lo, K. C., Bricker-Katz, G., Ballard, K., & Piguet, O. (2022). The affective, behavioural, and cognitive reactions to a diagnosis of primary progressive aphasia: A qualitative descriptive study. Dementia (London, England), 21(8), 2476–2498. https://doi.org/10.1177/14713012221124315
   PubMedGoogle Scholar
• Loizidou, M., Brotherhood, E., Harding, E., Crutch, S., Warren, J. D., Hardy, C. J., & Volkmer, A. (2023). ‘Like going into a chocolate shop, blindfolded’: What do people with primary progressive aphasia want from speech and language therapy? International Journal of Language and Communication Disorders, 58(3), 737–755. https://doi.org/10.1111/1460-6984.12818
   PubMed Web of Science ®Google Scholar
• Marshall, C. R., Hardy, C. J. D., Volkmer, A., Russell, L. L., Bond, R. L., Fletcher, P. D., Clark, C. N., Mummery, C. J., Schott, J. M., Rossor, M. N., Fox, N. C., Crutch, S. J., Rohrer, J. D., & Warren, J. D. (2018). Primary progressive aphasia: A clinical approach. Journal of Neurology, 265(6), 1474–1490. https://doi.org/10.1007/s00415-018-8762-6
   PubMed Web of Science ®Google Scholar
• McKevitt, C., Redfern, J., Mold, F., & Wolfe, C. (2004). Qualitative studies of stroke: A systematic review. Stroke, 35(6), 1499–1505. https://doi.org/10.1161/01.STR.0000127532.64840.36
   PubMed Web of Science ®Google Scholar
• Mertens, D. M., & McLaughlin, J. A. (2004). Research and evaluation methods in special education. Corwin Press. https://doi.org/10.4135/9781412985666
   Google Scholar
• Microsoft Corporation. (2018). Microsoft Excel. https://office.microsoft.com/excel
   Google Scholar
• Moore, N., Reeder, S., O’Keefe, S., Alves-Stein, S., Schneider, E., Moloney, K., Radford, K., & Lannin, N. A. (2023). I’ve still got a job to go back to”: The importance of early vocational rehabilitation after stroke. In Disability and Rehabilitation Ahead-of-Print(ahead-of-print) (pp. 1–8). https://doi.org/10.1080/09638288.2023.2230125
   Google Scholar
• Morgan, D. L. (2014). Pragmatism as a paradigm for social research. Qualitative Inquiry, 20(8), 1045–1053. https://doi.org/10.1177/1077800413513733
   Web of Science ®Google Scholar
• Morhardt, D. J., O’Hara, M. C., Zachrich, K., Wieneke, C., & Rogalski, E. J. (2019). Development of a psycho-educational support program for individuals with primary progressive aphasia and their care-partners. Dementia (London, England), 18(4), 1310–1327. https://doi.org/10.1177/1471301217699675
   PubMedGoogle Scholar
• Nowell, L. (2015). Pragmatism and integrated knowledge translation: Exploring the compatibilities and tensions. Nursing Open, 2(3), 141–148. https://doi.org/10.1002/nop2.30
   PubMedGoogle Scholar
• O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine, 89(9), 1245–1251. https://doi.org/10.1097/ACM.0000000000000388
   PubMed Web of Science ®Google Scholar
• O’Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the my story project, Aphasia! this is our world, and aphasia-friendly reading. Perspectives of the ASHA Special Interest Groups, 1–14. https://doi.org/10.1044/2024_PERSP-23-00272
   Google Scholar
• Patton, M. (2002). Qualitative research and evaluation methods (3rd ed ed.). Sage Publications.
   Google Scholar
• Peirce, C. (1905). Review of Nichols’ a treatise on cosmology. In H. S. Thayer (Ed.), Meaning and action: A critical history of pragmatism (pp. 493–495). Hackett.
   Google Scholar
• Poland, B. D. (1995). Transcription quality as an aspect of rigor in qualitative research. Qualitative Inquiry, 1(3), 290–310. https://doi.org/10.1177/107780049500100302
   Google Scholar
• Pozzebon, M., Douglas, J., & Ames, D. (2018). Facing the challenges of primary progressive aphasia: The spousal perspective. Journal of Speech, Language, and Hearing Research, 61(9), 2292–2312. https://doi.org/10.1044/2018_JSLHR-L-17-0492
   PubMed Web of Science ®Google Scholar
• Sajjadi, S. A., Patterson, K., Arnold, R. J., Watson, P. C., & Nestor, P. J. (2012). Primary progressive aphasia: A tale of two syndromes and the rest. Neurology, 78(21), 1670–1677. https://doi.org/10.1212/WNL.0b013e3182574f79
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health, 23(4), 334–340. https://doi.org/10.1002/1098-240X(200008)23:4<334:AID-NUR9>3.0.CO;2-G
   PubMed Web of Science ®Google Scholar
• Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing and Health, 33(1), 77–84. https://doi.org/10.1002/nur.20362
   PubMed Web of Science ®Google Scholar
• Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3–5), 211–223. https://doi.org/10.1080/02687930444000697
   Web of Science ®Google Scholar
• Shadden, B. B., & Agan, J. P. (2004). Renegotiation of identity: The social context of aphasia support groups. Topics in Language Disorders, 24(3), 174–186. https://doi.org/10.1097/00011363-200407000-00005
   Web of Science ®Google Scholar
• Simmons-Mackie, N., Kagan, A., & Shumway, E. (2018). Aphasia Severity Rating. Aphasia Institute. https://www.aphasia.ca/wpcontent/uploads/2019/04/Formatted_ASR_Apr1.pdf.
   Google Scholar
• Smith, S., & Connolly, S. (2020). Re-thinking unmet need for health care: Introducing a dynamic perspective. Health Economics, Policy and Law, 15(4), 440–457. https://doi.org/10.1017/S1744133119000161
   PubMed Web of Science ®Google Scholar
• Vlachantoni, A., Evandrou, M., Falkingham, J., & Qin, M. (2024). Dynamics of unmet need for social care in England. Ageing and Society, 44(6), 1247–1265. https://doi.org/10.1017/S0144686X22000745
   Google Scholar
• Wilson, C., & Kim, E. S. (2021). Qualitative data collection: Considerations for people with aphasia. Aphasiology, 35(3), 314–333. https://doi.org/10.1080/02687038.2019.1693027
   Web of Science ®Google Scholar
• Zoom Video Communications Inc. (2016). Security guide. Zoom Video Communications Inc. https://d24cgw3uvb9a9h.cloudfront.net/static/81625/doc/Zoom-Security-White-Paper.pdf
   Google Scholar