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Research Papers

People with aphasia share their views on self-management and the role of technology to support self-management of aphasia

ORCID Icon, ORCID Icon, , , &
Pages 7399-7412 | Received 10 Apr 2021, Accepted 01 Oct 2021, Published online: 17 Oct 2021

References

  • Code C, Petheram B. Delivering for aphasia. Int J Speech Lang Pathol. 2011;13(1):3–10.
  • Katz RC, Hallowell B, Code C, et al. A multinational comparison of aphasia management practices. Int J Lang Commun Disord. 2000;35(2):303–314.
  • Rose M, Ferguson A, Power E, et al. Aphasia rehabilitation in Australia: current practices, challenges and future directions. Int J Speech Lang Pathol. 2014;16(2):169–180.
  • Trebilcock M, Worrall L, Ryan B, et al. Increasing the intensity and comprehensiveness of aphasia services: identification of key factors influencing implementation across six countries. Aphasiology. 2019;33(7):865–887.
  • Worrall L, Sherratt S, Rogers P, et al. What people with aphasia want: their goals according to the ICF. Aphasiology. 2011;25(3):309–322.
  • Wallace SJ, Worrall L, Rose T, et al. Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disabil Rehabil. 2017;39(14):1364–1379.
  • Barlow J, Wright C, Sheasby J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–187.
  • Boger E, Demain SH, Latter S, M. Stroke self-management: a focus group study to identify the factors influencing self-management following stroke. Int J Nurs Stud. 2015;52(1):175–187.
  • Jones MA. Asthma self-management patient education. Respir Care. 2008;53(6):778–786.
  • Taylor SJ, Pinnock H, Epiphaniou E, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS–practical systematic review of self-management support for long-term conditions. Southampton (UK): NIHR Journals Library; 2014. p. 1-580.
  • Barlow J. How to use education as an intervention in osteoarthritis. Best Pract Res Clin Rheumatol. 2001;15(4):545–558.
  • Australian Health Ministers' Advisory Council. National strategic framework for chronic conditions. Canberra: Australian Government; 2017.
  • Lorig KR, Mazonson PD, Holman HR. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs . Arthritis Rheum. 1993;36(4):439–446.
  • Health Council of Canada. Self-management support for canadians with chronic health conditions: a focus for primary health care. Toronto: Health Council of Canada; 2012.
  • Wales Audit Office. The management of chronic conditions in Wales: an update. Cardiff (UK): Wales Audit Office; 2014.
  • Worrall L. Aphasia rehabilitation best practice statements 2014: comprehensive supplement to the Australian aphasia rehabilitation pathway; 2014.
  • Shrubsole K, Worrall L, Power E, et al. Recommendations for post-stroke aphasia rehabilitation: an updated systematic review and evaluation of clinical practice guidelines. Aphasiology. 2017;31(1):1–24.
  • Nichol L, Hill AJ, Wallace SJ, et al. Self-management of aphasia: a scoping review. Aphasiology. 2019;33(8):903–942.
  • Aftonomos LB, Steele RD, Wertz RT. Promoting recovery in chronic aphasia with an interactive technology. Arch Phys Med Rehabil. 1997;78(8):841–846.
  • De Cock E, Batens K, Feiken J, et al. The feasibility, usability and acceptability of a tablet-based aphasia therapy in the acute phase following stroke. J Commun Disord. 2021;89:106070.
  • Katz RC. Computers in the treatment of chronic aphasia. Semin Speech Lang. 2010;31(1):34–41.
  • Stark BC, Warburton EA. Improved language in chronic aphasia after self-delivered iPad speech therapy. Neuropsychol Rehabil. 2018;28(5):818–831.
  • Zheng C, Lynch L, Taylor N. Effect of computer therapy in aphasia: a systematic review. Aphasiology. 2016;30(2–3):211–244.
  • Shawar BA, Atwell ES. Using corpora in machine-learning chatbot systems. IJCL. 2005;10(4):489–516.
  • Kadariya D, Venkataramanan R, Yip HY, et al., editors. KBot: knowledge-enabled personalized chatbot for asthma self-management. In: 2019 IEEE International Conference on Smart Computing (SMARTCOMP); 2019. IEEE.
  • Tabak M, Brusse-Keizer M, van der Valk P, et al. A telehealth program for self-management of COPD exacerbations and promotion of an active lifestyle: a pilot randomized controlled trial. Int J Chron Obstruct Pulmon Dis. 2014;9:935–944.
  • Voncken-Brewster V, Tange H, de Vries H, et al. A randomized controlled trial evaluating the effectiveness of a web-based, computer-tailored self-management intervention for people with or at risk for COPD. Int J Chron Obstruct Pulmon Dis. 2015;10:1061–1073.
  • Deloitte Access Economics. Mobile Nation 2019: the 5G future. Australian Mobile Telecommunications Association; 2019 [cited].
  • Brandenburg C, Worrall L, Rodriguez AD, et al. Mobile computing technology and aphasia: an integrated review of accessibility and potential uses. Aphasiology. 2013;27(4):444–461.
  • Repetto C, Paolillo MP, Tuena C, et al. Innovative technology-based interventions in aphasia rehabilitation: a systematic review. Aphasiology. 2020:1–24.
  • Brandenburg C, Worrall L, Copland D, et al. The development and accuracy testing of CommFit™, an iPhone application for individuals with aphasia. Aphasiology. 2016;30(2–3):320–338.
  • Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–340.
  • Chafe R. The value of qualitative description in health services and policy research. Healthc Policy. 2017;12(3):12–18.
  • Bradshaw C, Atkinson S, Doody O. Employing a qualitative description approach in health care research. Glob Qual Nurs Res. 2017;4:2333393617742282.
  • Kertesz A. Western aphasia battery: revised. New York (NY): NCS Pearson; 2007.
  • Brown K, Worrall L, Davidson B, et al. Snapshots of success: an insider perspective on living successfully with aphasia. Aphasiology. 2010;24(10):1267–1295.
  • Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology. 1998;12(9):816–830.
  • Aleligay A, Worrall LE, Rose TA. Readability of written health information provided to people with aphasia. Aphasiology. 2008;22(4):383–407.
  • Luck AM, Rose ML. Interviewing people with aphasia: insights into method adjustments from a pilot study. Aphasiology. 2007;21(2):208–224.
  • Flick U. The sage handbook of qualitative data collection. London: Sage Publications Ltd; 2018.
  • Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112.
  • Guest G, MacQueen KM, Namey EE. Applied thematic analysis. Los Angeles (CA): Sage Publications; 2012. (Book, Whole).
  • Tuckett AG. Part II. Rigour in qualitative research: complexities and solutions. Nurse Res. 2005;13(1):29–42.
  • Pillow W. Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. Int J Qual Stud Educ. 2003;16(2):175–196.
  • Olesen V. Feminisms and models of qualitative research; 1994.
  • Jerant A, von Friederichs-‐Fitzwater MM, Moore M. Patients’ perceived barriers to active self‐management of chronic conditions. Patient Educ Couns. 2005;57(3):300–307.
  • Morris MA, Clayman ML, Peters KJ, et al. Patient-centered communication strategies for patients with aphasia: discrepancies between what patients want and what physicians do. Disabil Health J. 2015;8(2):208–215.
  • Lawn S, Battersby M, Lindner H, et al. What skills do primary health care professionals need to provide effective self-management support? Seeking consumer perspectives. Aust J Prim Health. 2009;15(1):37–44.
  • Brown K, Worrall LE, Davidson B, et al. Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. Int J Speech Lang Pathol. 2012;14(2):141–155.
  • Simmons-Mackie N, Raymer A, Armstrong E, et al. Communication partner training in aphasia: a systematic review. Arch Phys Med Rehabil. 2010;91(12):1814–1837.
  • Simmons-Mackie N, Savage MC, Worrall L. Conversation therapy for aphasia: a qualitative review of the literature. Int J Lang Commun Disord. 2014;49(5):511–526.
  • Brown K, Worrall L, Davidson B, et al. Living successfully with aphasia: family members share their views. Top Stroke Rehabil. 2011;18(5):536–548.
  • Reeves D, Blickem C, Vassilev I, et al. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLOS One. 2014;9(6):e98340.
  • Bellamy C, Schmutte T, Davidson L. An update on the growing evidence base for peer support. MHSI. 2017;21(3):161–167.
  • Clark E, MacCrosain A, Ward NS, et al. The key features and role of peer support within group self-management interventions for stroke? A systematic review. Disabil Rehabil. 2020;42(3):307–316.
  • Northcott S, Simpson A, Moss B, et al. Supporting people with aphasia to ‘settle into a new way to be’: speech and language therapists' views on providing psychosocial support. Int J Lang Commun Disord. 2018;53(1):16–29.
  • Gallant MP, Spitze GD, Prohaska TR. Help or hindrance? How family and friends influence chronic illness self-management among older adults. Res Aging. 2007;29(5):375–409.
  • Miller CK, Davis MS. The influential role of social support in diabetes management. Top Clin Nutr. 2005;20(2):157–165.
  • Vassilev I, Rogers A, Kennedy A, et al. The influence of social networks on self-management support: a metasynthesis. BMC Public Health. 2014;14(1):719.
  • Fernández-Peña R, Molina JL, Valero O. Satisfaction with social support received from social relationships in cases of chronic pain: the influence of personal network characteristics in terms of structure, composition and functional content. IJERPH. 2020;17(8):2706.
  • Dashiff C, Hardeman T, McLain R. Parent-adolescent communication and diabetes: an integrative review. J Adv Nurs. 2008;62(2):140–162.
  • Thompson D, Callender C, Gonynor C, et al. Using relational agents to promote family communication around type 1 diabetes self-management in the diabetes family teamwork online intervention: longitudinal pilot study. J Med Internet Res. 2019;21(9):e15318.
  • Rohrbaugh MJ, Mehl MR, Shoham V, et al. Prognostic significance of spouse we talk in couples coping with heart failure. J Consult Clin Psychol. 2008;76(5):781–789.
  • Rosland A-M, Heisler M, Piette JD. The impact of family behaviors and communication patterns on chronic illness outcomes: a systematic review. J Behav Med. 2012;35(2):221–239.
  • Howe T, Davidson B, Worrall L, et al. ‘You needed to rehab … families as well’: family members' own goals for aphasia rehabilitation. Int J Lang Commun Disord. 2012;47(5):511–521.
  • Simmons-Mackie N, Raymer A, Cherney LR. Communication partner training in aphasia: an updated systematic review. Arch Phys Med Rehabil. 2016;97(12):2202–2221.e8.
  • Koetsenruijter J, van Eikelenboom N, van Lieshout J, et al. Social support and self-management capabilities in diabetes patients: an international observational study. Patient Educ Couns. 2016;99(4):638–643.
  • Rose T, Worrall L, Hickson L, et al. Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information. Top Stroke Rehabil. 2010;17(2):79–98.
  • Foster AM, Worrall LE, Rose ML, et al. ‘I do the best I can’: an in-depth exploration of the aphasia management pathway in the acute hospital setting. Disabil Rehabil. 2016;38(18):1765–1779.
  • Nichol L, Wallace SJ, Pitt R, et al. Communication partner perspectives of aphasia self-management and the role of technology: an in-depth qualitative exploration. Disabil Rehabil. Forthcoming 2021.
  • Jensen MP, Nielson WR, Kerns RD. Toward the development of a motivational model of pain self-management. J Pain. 2003;4(9):477–492.
  • Jung MJ, Jeong Y. Motivation and self-management behavior of the individuals with chronic low back pain. Orthopaed Nurs. 2016;35(5):330–337.
  • Furler J, Walker C, Blackberry I, et al. The emotional context of self-management in chronic illness: a qualitative study of the role of health professional support in the self-management of type 2 diabetes. BMC Health Serv Res. 2008;8(1):214.
  • Ashaie SA, Hurwitz R, Cherney LR. Depression and subthreshold depression in stroke-related aphasia. Arch Phys Med Rehabil. 2019;100(7):1294–1299.
  • Shehata GA, El Mistikawi T, Al Sayed KR, et al. The effect of aphasia upon personality traits, depression and anxiety among stroke patients. J Affect Disord. 2015;172:312–314.
  • Burke J, Palmer R, Harrison M. What are the factors that may influence the implementation of self-managed computer therapy for people with long term aphasia following stroke? A qualitative study of speech and language therapists’ experiences in the big CACTUS trial. Disabil Rehabil. 2021:1–13.
  • Marshall J, Caute A, Chadd K, et al. Technology-enhanced writing therapy for people with aphasia: results of a quasi-randomized waitlist controlled study. Int J Lang Commun Disord. 2019;54(2):203–220.
  • Moss R. Using assistive technology software to compensate for writing and reading impairments in aphasia [dissertation]. London City: University of London; 2017.
  • Marshall J, Booth T, Devane N, et al. Evaluating the benefits of aphasia intervention delivered in virtual reality: results of a quasi-randomised study. PLOS One. 2016;11(8):e0160381.
  • Allen M, Iezzoni LI, Huang A, et al. Improving patient-clinician communication about chronic conditions: description of an internet-based nurse E-coach intervention. Nurs Res. 2008;57(2):107–112.
  • De Jong CC, Ros WJ, Schrijvers G. The effects on health behavior and health outcomes of internet-based asynchronous communication between health providers and patients with a chronic condition: a systematic review. J Med Internet Res. 2014;16(1):e19.
  • Paré G, Jaana M, Sicotte C. Systematic review of home telemonitoring for chronic diseases: the evidence base. J Am Med Inform Assoc. 2007;14(3):269–277.
  • 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.
  • Riegel B, Lee CS, Dickson VV, et al. Self care in patients with chronic heart failure. Nat Rev Cardiol. 2011;8(11):644–654.
  • Adam J, Folds L. Depression, self-efficacy, and adherence in patients with type 2 diabetes. J Nurse Pract. 2014;10(9):646–652.
  • Cumming TB, Packer M, Kramer SF, et al. The prevalence of fatigue after stroke: a systematic review and meta-analysis. Int J Stroke. 2016;11(9):968–977.
  • Hankey GJ, Jamrozik K, Broadhurst RJ, et al. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989–1990. Stroke. 2002;33(4):1034–1040.
  • Code C. The implications of public awareness and knowledge of aphasia around the world. Ann Indian Acad Neurol. 2020;23(Suppl 2):S95–S101.
  • Howe TJ, Worrall LE, Hickson LMH. Interviews with people with aphasia: environmental factors that influence their community participation. Aphasiology. 2008;22(10):1092–1120.
  • Barker-Collo S, Bennett DA, Krishnamurthi RV, et al. Sex differences in stroke incidence, prevalence, mortality and disability-adjusted life years: results from the global burden of disease study 2013. Neuroepidemiology. 2015;45(3):203–214.

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