“I’ve Got No Skills to Maintain – to Keep That Going”: A Qualitative Study of People with Chronic Aphasia and Their Partners About Factors Contributing to the Maintenance of Aphasia Therapy Gains

References

• Arlinghaus, K. R., & Johnston, C. A. (2019). The Importance of Creating Habits and Routine. American Journal of Lifestyle Medicine, 13(2), 142–144. https://doi.org/10.1177/1559827618818044
   PubMed Web of Science ®Google Scholar
• Baker, C., Worrall, L., Rose, M., & Ryan, B. (2020). ‘It was really dark’: The experiences and preferences of people with aphasia to manage mood changes and depression. Aphasiology, 34(1), 19–46. https://doi.org/10.1080/02687038.2019.1673304
   Google Scholar
• Bandura, A. (1986). Social foundations of thought and action: a social cognitive theory. Prentice-Hall.
   Google Scholar
• Barlow, J. H., Bancroft, G. V., & Turner, A. P. (2005). Self-management training for people with chronic disease: a shared learning experience. Journal of Health Psychology, 10(6), 863–872. https://doi.org/10.1177/1359105305057320
   PubMed Web of Science ®Google Scholar
• Biel, M., Nitta, L., & Jackson, C. (2017). Understanding motivation in aphasia rehabilitation. In Coppens, P. & Patterson, J. L. (Eds.), Aphasia Rehabilitation: Clinical Challenges (pp. 393–495). Jones & Bartlett Learning.
   Google Scholar
• Bouton, M. E. (2000). A learning theory perspective on lapse, relapse, and the maintenance of behavior change. Health Psychology, 19(1, Suppl), 57–63. https://doi.org/10.1037/0278-6133.19.suppl1.57
   PubMed Web of Science ®Google Scholar
• Bradbury-Jones, C., Breckenridge, J., Clark, M. T., Herber, O. R., Wagstaff, C., & Taylor, J. (2017). The state of qualitative research in health and social science literature: a focused mapping review and synthesis. International Journal of Social Research Methodology, 20(6), 627–645. https://doi.org/10.1080/13645579.2016.1270583
   Web of Science ®Google Scholar
• Bradshaw, C., Atkinson, S., & Doody, O. (2017). Employing a qualitative description approach in health care research. Global Qualitative Nursing Research, 4, 1–8. https://doi.org/10.1177/2333393617742282
   Web of Science ®Google Scholar
• Brady, M. C., Kelly, H., Godwin, J., Enderby, P., & Campbell, P. (2016). Speech and language therapy for aphasia following stroke. Cochrane Database of Systematic Reviews(6), CD000425. https://doi.org/10.1002/14651858.CD000425.pub4
   Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., Clarke, V., Hayfield, N., & Terry, G. (2019). Thematic Analysis. In P. Liamputtong (Ed.), Handbook of Research Methods in Health Social Sciences (pp. 843–860). Springer Singapore. https://doi.org/10.1007/978-981-10-5251-4_103
   Google Scholar
• Breitenstein, C., Grewe, T., Flöel, A., Ziegler, W., Springer, L., Martus, P., Huber, W., Willmes, K., Ringelstein, E. B., Haeusler, K. G., & Baumgaertner, A. (2017). Intensive speech and language therapy in patients with chronic aphasia after stroke: a randomised, open-label, blinded-endpoint, controlled trial in a health-care setting. The Lancet, 389(10078), 1528–1538. https://doi.org/10.1016/S0140-6736(17)30067-3
   PubMed Web of Science ®Google Scholar
• Breitenstein, C., Hilari, K., Menahemi-Falkov, M., Rose, M. L., Wallace, S. J., Brady, M. C., Hillis, A. E., Kiran, S., Szaflarski, J. P., & Tippett, D. C. (2021). Operationalising treatment success in aphasia rehabilitation. Aphasiology, 1–40. https://doi.org/10.1080/02687038.2021.2016594
   PubMed Web of Science ®Google Scholar
• Brown, K., Worrall, L. E., Davidson, B., & Howe, T. (2012). Living successfully with aphasia: A qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. International Journal of Speech-Language Pathology, 14(2), 141–155. https://doi.org/10.3109/17549507.2011.632026
   PubMed Web of Science ®Google Scholar
• Code, C. (2003). The quantity of life for people with chronic aphasia. Neuropsychological Rehabilitation, 13(3), 379–390. https://doi.org/10.1080/09602010244000255
   PubMed Web of Science ®Google Scholar
• Crotty, M. (1998). The Foundations of Social Research: Meaning and Perspective in the Research Process. Sydney : Allen & Unwin. https://doi.org/10.4324/9781003115700
   Google Scholar
• Cruice, M., Worrall, L., & Hickson, L. (2006). Quantifying aphasic people’s social lives in the context of non‐aphasic peers. Aphasiology, 20(12), 1210–1225. https://doi.org/10.1080/02687030600790136
   Web of Science ®Google Scholar
• Dalemans, R. J., De Witte, L., Wade, D., & van den Heuvel, W. (2010). Social participation through the eyes of people with aphasia. International Journal of Language & Communication Disorders, 45(5), 537–550. https://doi.org/10.3109/13682820903223633
   PubMed Web of Science ®Google Scholar
• Deci, E. L., & Ryan, R. M. (2000). The “what” and” why” of goal pursuits: Human needs and the self-determination of behavior. Psychological Inquiry, 11(4), 227–268. https://doi.org/10.1207/S15327965PLI1104_01
   Web of Science ®Google Scholar
• Dijkerman, H. C., Wood, V. A., & Hewer, R. L. (1996). Long-term outcome after discharge from a stroke rehabilitation unit. Journal of the Royal College of Physicians of London, 30(6), 538. https://www.ncbi.nlm.nih.gov/pubmed/8961209
   PubMedGoogle Scholar
• El Hachioui, H., Lingsma, H. F., van de Sandt-Koenderman, M. W., Dippel, D. W., Koudstaal, P. J., & Visch-Brink, E. G. (2013). Long-term prognosis of aphasia after stroke. Journal of Neurology, Neurosurgery & Psychiatry, 84(3), 310–315. https://doi.org/10.1136/jnnp-2012-302596
   PubMed Web of Science ®Google Scholar
• Fallahpour, M., Tham, K., Joghataei, M. T., & Jonsson, H. (2011). Perceived participation and autonomy: aspects of functioning and contextual factors predicting participation after stroke. Journal of Rehabilitation Medicine, 43(5), 388–397. https://doi.org/10.2340/16501977-0789
   PubMed Web of Science ®Google Scholar
• Glasgow, R. E., Harden, S. M., Gaglio, B., Rabin, B., Smith, M. L., Porter, G. C., Ory, M. G., & Estabrooks, P. A. (2019). RE-AIM Planning and Evaluation Framework: Adapting to New Science and Practice With a 20-Year Review. Frontiers in Public Health, 7, 64. https://doi.org/10.3389/fpubh.2019.00064
   PubMed Web of Science ®Google Scholar
• Glasgow, R. E., Vogt, T. M., & Boles, S. M. (1999). Evaluating the public health impact of health promotion interventions: the RE-AIM framework. American Journal of Public Health, 89(9), 1322–1327. https://doi.org/10.2105/ajph.89.9.1322
   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
• Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2014). Describing the impact of aphasia on close family members using the ICF framework. Disability and Rehabilitation, 36(14), 1184–1195. https://doi.org/10.3109/09638288.2013.834984
   PubMed Web of Science ®Google Scholar
• Håkansson Eklund, J., Holmström, I. K., Kumlin, T., Kaminsky, E., Skoglund, K., Höglander, J., Sundler, A. J., Condén, E., & Summer Merenius, M. (2019). Same same or different? A review of reviews of person-centred and patient-centred care. Patient Education and Counseling, 102(1), 3–11. https://doi.org/10.1016/j.pec.2018.08.029
   PubMed Web of Science ®Google Scholar
• Hersh, D. J., & Ciccone, N. (2016). Predicting potential for aphasia rehabilitation: The role of judgments of motivation. Journal of Clinical Practice in Speech-Language Pathology, 18(1), 3–7.
   Google Scholar
• Hilari, K., Wiggins, R., Roy, P., Byng, S., & Smith, S. (2003). Predictors of health-related quality of life (HRQL) in people with chronic aphasia. Aphasiology, 17(4), 365–381. https://doi.org/10.1080/02687030244000725
   Web of Science ®Google Scholar
• Hofmann, W., Schmeichel, B. J., & Baddeley, A. D. (2012). Executive functions and self-regulation. Trends in Cognitive Sciences, 16(3), 174–180. https://doi.org/10.1016/j.tics.2012.01.006
   PubMed Web of Science ®Google Scholar
• Howe, T., Davidson, B., Worrall, L., Hersh, D., Ferguson, A., Sherratt, S., & Gilbert, J. (2012). ‘You needed to rehab … families as well’: family members’ own goals for aphasia rehabilitation. International Journal of Language & Communication Disorders, 47(5), 511–521. https://doi.org/10.1111/j.1460-6984.2012.00159.x
   PubMed Web of Science ®Google Scholar
• Kanfer, F. H., & Karoly, P. (1972). Self-control: A behavioristic excursion into the lion’s den. Behavior Therapy, 3(3), 398–416. https://doi.org/10.1016/S0005-7894(72)80140-0
   Web of Science ®Google Scholar
• Kleim, J. A., & Jones, T. A. (2008). Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. Journal of Speech, Language, and Hearing Research, 51(1), S225–239. https://doi.org/10.1044/1092-4388(2008/018)
   PubMed Web of Science ®Google Scholar
• Kristinsson, S., Basilakos, A., Den Ouden, D. B., Cassarly, C., Spell, L. A., Bonilha, L., Rorden, C., Hillis, A. E., Hickok, G., & Johnson, L. (2023). Predicting Outcomes of Language Rehabilitation: Prognostic Factors for Immediate and Long-Term Outcomes After Aphasia Therapy. Journal of Speech, Language, and Hearing Research, 66(3), 1068–1084. https://doi.org/10.1044/2022_JSLHR-22-00347
   PubMed Web of Science ®Google Scholar
• Kvale, S. (2015). InterViews : Learning the Craft of Qualitative Research Interviewing (3rd ed.). Los Angeles : Sage Publications.
   Google Scholar
• Kwasnicka, D., Dombrowski, S. U., White, M., & Sniehotta, F. (2016). Theoretical explanations for maintenance of behaviour change: A systematic review of behaviour theories. Health Psychology Review, 10(3), 277–296. https://doi.org/10.1080/17437199.2016.1151372
   PubMed Web of Science ®Google Scholar
• Lanyon, L., Worrall, L., & Rose, M. (2019). “It’s not really worth my while”: understanding contextual factors contributing to decisions to participate in community aphasia groups. Disability and Rehabilitation, 41(9), 1024–1036. https://doi.org/10.1080/09638288.2017.1419290
   PubMed Web of Science ®Google Scholar
• Maclean, N., Pound, P., Wolfe, C., & Rudd, A. (2002). The concept of patient motivation: a qualitative analysis of stroke professionals’ attitudes. Stroke, 33(2), 444–448. https://doi.org/10.1161/hs0202.102367
   PubMed Web of Science ®Google Scholar
• Menahemi-Falkov, M., Breitenstein, C., Pierce, J. E., Hill, A. J., O’Halloran, R., & Rose, M. L. (2022). A systematic review of maintenance following intensive therapy programs in chronic post-stroke aphasia: importance of individual response analysis. Disability and Rehabilitation, 44(20), 1–16. https://doi.org/10.1080/09638288.2021.1955303
   PubMed Web of Science ®Google Scholar
• Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410–1415. https://doi.org/10.1080/02687038.2017.1304633
   Web of Science ®Google Scholar
• Nichol, L., Wallace, S. J., Pitt, R., Rodriguez, A. D., Diong, Z. Z., & Hill, A. J. (2022). People with aphasia share their views on self-management and the role of technology to support self-management of aphasia. Disability and Rehabilitation, 44(24), 7399–7412. https://doi.org/10.1080/09638288.2021.1989501
   PubMed Web of Science ®Google Scholar
• Nichol, L., Wallace, S. J., Pitt, R., Rodriguez, A. D., & Hill, A. J. (2022). Communication partner perspectives of aphasia self-management and the role of technology: an in-depth qualitative exploration. Disability and Rehabilitation, 44(23), 7199–7216. https://doi.org/10.1080/09638288.2021.1988153
   PubMed Web of Science ®Google Scholar
• Palmer, R., Witts, H., & Chater, T. (2018). What speech and language therapy do community dwelling stroke survivors with aphasia receive in the UK? PLOS ONE, 13(7), e0200096. https://doi.org/10.1371/journal.pone.0200096
   PubMed Web of Science ®Google Scholar
• Papathanasiou, I. (2017). Aphasia and Related Neurogenic Communication Disorders (2nd ed.). Jones & Bartlett Publishers.
   Google Scholar
• Park, Y. H., Jang, J.-W., Park, S. Y., Wang, M. J., Lim, J.-S., Baek, M. J., Kim, B. J., Han, M.-K., Bae, H.-J., & Ahn, S. (2015). Executive function as a strong predictor of recovery from disability in patients with acute stroke: a preliminary study. Journal of Stroke and Cerebrovascular Diseases, 24(3), 554–561. https://doi.org/10.1016/j.jstrokecerebrovasdis.2014.09.033
   PubMed Web of Science ®Google Scholar
• Patton, M. Q. (2015). Qualitative Research & Evaluation Methods : Integrating Theory and Practice (4th ed.). Sage.
   Google Scholar
• Perry,A.(2004). Therapy outcome measures for allied health practitioners in Australia: the AusTOMs. International Journal for Quality in Health Care, 16(4), 285–291. https://doi.org/10.1093/intqhc/mzh059
   PubMed Web of Science ®Google Scholar
• Prochaska, J. O., DiClemente, C. C., & Norcross, J. C. (1992). In search of how people change: applications to addictive behaviors. The American Psychologist, 47(9), 1102–1114. https://doi.org/10.1037/0003-066X.47.9.1102
   PubMed Web of Science ®Google Scholar
• Purdy, M. (2002). Executive function ability in persons with aphasia. Aphasiology, 16(4–6), 549–557. https://doi.org/10.1080/02687030244000176
   Google Scholar
• Raymer, A. M., Beeson, P., Holland, A., Kendall, D., Maher, L. M., Martin, N., Murray, L., Rose, M., Thompson, C. K., & Turkstra, L. (2008). Translational research in aphasia: From neuroscience to neurorehabilitation. Journal of Speech, Language, and Hearing Research, 51(1), S259–275. https://doi.org/10.1044/1092-4388(2008/020)
   PubMed Web of Science ®Google Scholar
• Rose, M., Ferguson, A., Power, E., Togher, L., & Worrall, L. (2014). Aphasia rehabilitation in Australia: Current practices, challenges and future directions. International Journal of Speech-Language Pathology, 16(2), 169–180. https://doi.org/10.3109/17549507.2013.794474
   PubMed Web of Science ®Google Scholar
• Rose, M., Nickels, L., Copland, D., Togher, L., Godecke, E., Meinzer, M., Rai, T., Cadilhac, D. A., Kim, J., Hurley, M., Foster, A., Carragher, M., Wilcox, C., Pierce, J. E., & Steel, G. (2022). Results of the COMPARE trial of Constraint-induced or Multimodality Aphasia Therapy compared with usual care in chronic post-stroke aphasia. Journal of Neurology, Neurosurgery & Psychiatry 93(6), 573–581. https://doi.org/10.1136/jnnp-2021-328422
   PubMedGoogle Scholar
• Rothman, A. J., Baldwin, A. S., Hertel, A. W., & Fuglestad, P. T. (2011). Self-regulation and behavior change: Disentangling behavioral initiation and behavioral maintenance. In K. D. Vohs & R. F. Baumeister (Eds.), Handbook of self-regulation: Research, theory, and applications (pp. 106–122). The Guilford Press.
   Google Scholar
• Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American psychologist, 55(1), 68–78. https://doi.org/10.1037//0003-066x.55.1.68
   PubMed Web of Science ®Google Scholar
• Schwarzer, R. (2008). Modeling health behavior change: How to predict and modify the adoption and maintenance of health behaviors. Applied Psychology, 57(1), 1–29.
   Web of Science ®Google Scholar
• Sheeran, P., Maki, A., Montanaro, E., Avishai-Yitshak, A., Bryan, A., Klein, W. M., Miles, E., & Rothman, A. J. (2016). The impact of changing attitudes, norms, and self-efficacy on health-related intentions and behavior: A meta-analysis. Health Psychology, 35(11), 1178. https://doi.org/10.1037/hea0000387
   PubMed Web of Science ®Google Scholar
• Simic, T., Rochon, E., Greco, E., & Martino, R. (2017). Baseline executive control ability and its relationship to language therapy improvements in post-stroke aphasia: a systematic review. Neuropsychological Rehabilitation, 29(3), 1–45. https://doi.org/10.1080/09602011.2017.1307768
   Web of Science ®Google Scholar
• Skidmore, E. R., Whyte, E. M., Holm, M. B., Becker, J. T., Butters, M. A., Dew, M. A., Munin, M. C., & Lenze, E. J. (2010). Cognitive and affective predictors of rehabilitation participation after stroke. Archives of Physical Medicine and Rehabilitation, 91(2), 203–207. https://doi.org/10.1016/j.apmr.2009.10.026
   PubMed Web of Science ®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. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Verplanken, B., & Orbell, S. (2003). Reflections on past behavior: a self‐report index of habit strength. Journal of applied social psychology, 33(6), 1313–1330. https://doi.org/10.1111/j.1559-1816.2003.tb01951.x
   Web of Science ®Google Scholar
• Voils, C. I., Gierisch, J. M., Yancy Jr, W. S., Sandelowski, M., Smith, R., Bolton, J., & Strauss, J. L. (2014). Differentiating behavior initiation and maintenance: Theoretical framework and proof of concept. Health Education & Behavior, 41(3), 325–336. https://doi.org/10.1177/1090198113515242
   PubMed Web of Science ®Google Scholar
• Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., Kong, A. P. H., Simmons-Mackie, N., Scarinci, N., & Gauvreau, C. A. (2017). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 39(14), 1364–1379. https://doi.org/10.1080/09638288.2016.1194899
   PubMed Web of Science ®Google Scholar
• Weatherill, M., Tibus, E. O., & Rodriguez, A. D. (2022). Motivation as a predictor of aphasia treatment outcomes: A scoping review. Topics in Language Disorders, 42(3), 252–265. https://doi.org/10.1097/TLD.0000000000000286
   Web of Science ®Google Scholar
• Witkiewitz, K., & Marlatt, G. A. (2009). Relapse prevention for alcohol and drug problems: that was Zen, this is Tao. The American Psychologist, 59(4), 224–235. https://doi.org/10.1037/0003-066X.59.4.224
   Google Scholar
• Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309–322. https://doi.org/10.1080/02687038.2010.508530
   Web of Science ®Google Scholar
• Wray, F., & Clarke, D. (2017). Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies. BMJ Open, 7(10), e017944. https://doi.org/10.1136/bmjopen-2017-017944
   PubMed Web of Science ®Google Scholar