Development of the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia

References

• Lindsay MP, Norrving B, Sacco RL, et al. World stroke organization (WSO): global stroke fact sheet 2019. London: SAGE Publications Sage UK; 2019.
   Google Scholar
• Economics DA. The economic impact of stroke in Australia. Melbourne: NSF; 2013.
   Google Scholar
• Golovacheva V, Golovacheva A. Poststroke cognitive impairment: diagnosis and treatment. RJTAO. 2018;10(2):88–94.
   Google Scholar
• Skolarus LE, Burke JF, Brown DL, et al. Understanding stroke survivorship: expanding the concept of poststroke disability. Stroke. 2014;45(1):224–230.
   PubMed Web of Science ®Google Scholar
• Kneebone II, Lincoln NB. Psychological problems after stroke and their management: state of knowledge. Neurosci Med. 2012;3(01):83–89.
   Google Scholar
• Lincoln NB, Kneebone II, Macniven JA, et al. Psychological management of stroke. Chichester (UK): Wiley; 2011.
   Google Scholar
• Burton CAC, Murray J, Holmes J, et al. Frequency of anxiety after stroke: a systematic review and meta-analysis of observational studies. Int J Stroke. 2013;8(7):545–559.
   PubMed Web of Science ®Google Scholar
• Flowers HL, Skoretz SA, Silver FL, et al. Poststroke aphasia frequency, recovery, and outcomes: a systematic review and meta-analysis. Arch Phys Med Rehabil. 2016;97(12):2188–2201.e8.
   PubMed Web of Science ®Google Scholar
• Hallowell B, Chapey R. Introduction to language intervention strategies in adult aphasia. Philadelphia (USA): Wolters Kluwer; 2008. p. 3–19.
   Google Scholar
• Kutlubaev MA, Hackett ML. Part II: predictors of depression after stroke and impact of depression on stroke outcome: an updated systematic review of observational studies. Int J Stroke. 2014;9(8):1026–1036.
   PubMed Web of Science ®Google Scholar
• Arba F, Quinn T, Hankey G, et al. Determinants of post-stroke cognitive impairment: analysis from VISTA. Acta Neurol Scand. 2017;135(6):603–607.
   PubMedGoogle Scholar
• Menlove L, Crayton E, Kneebone I, et al. Predictors of anxiety after stroke: a systematic review of observational studies. J Stroke Cerebrovasc Dis. 2015;24(6):1107–1117.
   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.
   Web of Science ®Google Scholar
• Stroke F. National stroke audit – rehabilitation services report. Melbourne; 2020.
   Google Scholar
• Baker C, Worrall L, Rose M, et al. A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disabil Rehabil. 2018;40(16):1870–1892.
   PubMed Web of Science ®Google Scholar
• Sentinel Stroke National Audit Programme. The seventh SSNAP annual report. London; 2017.
   Google Scholar
• Green G, Maddula M. New Zealand stroke rehabilitation: a strategy. New Zealand: Stroke Foundation New Zealand; 2018.
   Google Scholar
• Thompson S, Barber A, Fink J, et al. New Zealand hospital stroke service provision. N Z Med J. 2020;133(1526):18–30.
   PubMedGoogle Scholar
• Knapp P, Burton CAC, Holmes J, et al. Interventions for treating anxiety after stroke. Cochrane Database Syst Rev. 2017;2017(5):9–15.
   Google Scholar
• Chun H-YY, Newman R, Whiteley WN, et al. A systematic review of anxiety interventions in stroke and acquired brain injury: efficacy and trial design. J Psychosom Res. 2018;104:65–75.
   PubMed Web of Science ®Google Scholar
• Townend E, Brady M, McLaughlan K. Exclusion and inclusion criteria for people with aphasia in studies of depression after stroke: a systematic review and future recommendations. Neuroepidemiology. 2007;29(1–2):1–17.
   PubMed Web of Science ®Google Scholar
• Wray F, Clarke D, Forster A. Post-stroke self-management interventions: a systematic review of effectiveness and investigation of the inclusion of stroke survivors with aphasia. Disabil Rehabil. 2018;40(11):1237–1251.
   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 Rehabil. 2021;43(2):217–212.
   PubMed Web of Science ®Google Scholar
• Sekhon JK, Douglas J, Rose ML. Current Australian speech-language pathology practice in addressing psychological well-being in people with aphasia after stroke. Int J Speech Lang Pathol. 2015;17(3):252–262.
   PubMed Web of Science ®Google Scholar
• Rowland A, McDonald L. Evaluation of social work communication skills to allow people with aphasia to be part of the decision making process in healthcare. Social Work Education. 2009;28(2):128–144.
   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.
   Google Scholar
• Manzoni GM, Pagnini F, Castelnuovo G, et al. Relaxation training for anxiety: a ten-years systematic review with meta-analysis. BMC Psychiatry. 2008;8(1):41–12.
   PubMedGoogle Scholar
• Jorm AF, Morgan AJ, Hetrick SE. Relaxation for depression. Cochrane Database Syst Rev. 2008;(4):6–12.
   Google Scholar
• Carin-Levy G, Kendall M, Young A, et al. The psychosocial effects of exercise and relaxation classes for persons surviving a stroke. Can J Occup Ther. 2009;76(2):73–80.
   PubMed Web of Science ®Google Scholar
• Jani BD, Simpson R, Lawrence M, et al. Acceptability of mindfulness from the perspective of stroke survivors and caregivers: a qualitative study. Pilot Feasibility Stud. 2018;4(1):1–9.
   PubMedGoogle Scholar
• Ryan BJ, Clunne SM, Baker CJ, et al. A systematic review of non-drug interventions to prevent and treat anxiety in people with aphasia after stroke. Disabi Rehabil. 2021. DOI:10.1080/09638288.2021.1925752
   Google Scholar
• Baker C, Rose ML, Ryan B, et al. Barriers and facilitators to implementing stepped psychological care for people with aphasia: perspectives of stroke health professionals. Top Stroke Rehab. 2021;28(8):581–513.
   PubMed Web of Science ®Google Scholar
• Wang X, Smith C, Ashley L, et al. Tailoring self-help mindfulness and relaxation techniques for stroke survivors: examining preferences, feasibility and acceptability. Front Psychol. 2019;10:391.
   PubMed Web of Science ®Google Scholar
• Wang M, Liao W, Chen X. Effects of a short-term mindfulness-based intervention on comfort of stroke survivors undergoing inpatient rehabilitation. Rehabil Nurs J. 2019;44(2):78–86.
   PubMedGoogle Scholar
• Shek AC, Biondi A, Ballard D, et al. Technology-based interventions for mental health support after stroke: a systematic review of their acceptability and feasibility. Neuropsychol Rehabil. 2021;31(3):432–421.
   PubMed Web of Science ®Google Scholar
• Repetto C, Paolillo MP, Tuena C, et al. Innovative technology-based interventions in aphasia rehabilitation: a systematic review. Aphasiology. 2021;35(12):1623–1624.
   Web of Science ®Google Scholar
• Golding K, Kneebone I, Fife-Schaw C. Self-help relaxation for post-stroke anxiety: a randomised, controlled pilot study. Clin Rehabil. 2016;30(2):174–180.
   PubMed Web of Science ®Google Scholar
• Golding K, Fife-Schaw C, Kneebone I. Twelve month follow-up on a randomised controlled trial of relaxation training for post-stroke anxiety. Clin Rehabil. 2017;31(9):1164–1167.
   PubMedGoogle Scholar
• Eccles A, Morris R, Kneebone I. Psychometric properties of the behavioural outcomes of anxiety questionnaire in stroke patients with aphasia. Clin Rehabil. 2017;31(3):369–378.
   PubMed Web of Science ®Google Scholar
• Kingston GA, Williams G, Gray MA, et al. Does a DVD improve compliance with home exercise programs for people who have sustained a traumatic hand injury? Results of a feasibility study. Disabil Rehabil Assist Technol. 2014;9(3):188–194.
   PubMedGoogle Scholar
• Ostermann J, Brown DS, de Bekker-Grob EW, et al. Preferences for health interventions: improving uptake, adherence, and efficiency. Patient. 2017;10(4):511–514.
   PubMedGoogle Scholar
• Mohr DC, Weingardt KR, Reddy M, et al. Three problems with current digital mental health research … and three things we can do about them. Psychiatr Serv. 2017;68(5):427–429.
   PubMed Web of Science ®Google Scholar
• Goodyear-Smith F, Jackson C, Greenhalgh T. Co-design and implementation research: challenges and solutions for ethics committees. BMC Med Ethics. 2015;16(1):78.
   PubMed Web of Science ®Google Scholar
• Ospina-Pinillos L, Davenport TA, Ricci CS, et al. Developing a mental health eClinic to improve access to and quality of mental health care for young people: using participatory design as research methodologies. J Med Internet Res. 2018;20(5):e188.
   PubMed Web of Science ®Google Scholar
• Craig P, Dieppe P, Macintyre S, et al. Developing and evaluating complex interventions: the new medical research council guidance. BMJ. 2008;337:a1655.
   PubMed Web of Science ®Google Scholar
• Slattery P, Saeri AK, Bragge P. Research co-design in health: a rapid overview of reviews. Health Res Policy Syst. 2020;18(1):17.
   PubMed Web of Science ®Google Scholar
• Burkett I. An introduction to co-design. Sydney: Knode; 2012. p. 12.
   Google Scholar
• Hinchcliff R, Greenfield D, Braithwaite J. Is it worth engaging in multi-stakeholder health services research collaborations? Reflections on key benefits, challenges and enabling mechanisms. Int J Qual Health Care. 2014;26(2):124–128.
   PubMedGoogle Scholar
• Fitzgerald L, Harvey G. Translational networks in healthcare? Evidence on the design and initiation of organizational networks for knowledge mobilization. Soc Sci Med. 2015;138:192–200.
   PubMedGoogle Scholar
• Boyd H, McKernon S, Mullin B, et al. Improving healthcare through the use of co-design. N Z Med J. 2012;125(1357):76–87.
   PubMedGoogle Scholar
• Piper D, Iedema R, Gray J, et al. Utilizing experience-based co-design to improve the experience of patients accessing emergency departments in New South Wales public hospitals: an evaluation study. Health Serv Manage Res. 2012;25(4):162–172.
   PubMedGoogle Scholar
• Eyles H, Jull A, Dobson R, et al. Co-design of mHealth delivered interventions: a systematic review to assess key methods and processes. Curr Nutr Rep. 2016;5(3):160–167.
   Google Scholar
• Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589–597.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
   Google Scholar
• Orkin AM, Gill PJ, Ghersi D, et al. Guidelines for reporting trial protocols and completed trials modified due to the COVID-19 pandemic and other extenuating circumstances: the CONSERVE 2021 statement. JAMA. 2021;326(3):257–265.
   PubMed Web of Science ®Google Scholar
• Zoom Video Communications Inc. 2019. Zoom meetings & chat. Available from: https://zoom.us
   Google Scholar
• Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology. 1998;12(9):816–830.
   Web of Science ®Google Scholar
• Sapolsky D, Domoto-Reilly K, Dickerson BC. Use of the progressive aphasia severity scale (PASS) in monitoring speech and language status in PPA. Aphasiology. 2014;28(8–9):993–1003.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qual Res Sport Exerc Health. 2021;13(2):201–216.
   Web of Science ®Google Scholar
• Sanders E-N. Generative tools for co-designing. In Collaborative design. London (UK): Springer; 2000. p. 3–12.
   Google Scholar
• Sanders E, Stappers PJ. Probes, toolkits and prototypes: three approaches to making in codesigning. CoDesign. 2014;10(1):5–6.
   Web of Science ®Google Scholar
• Winkler R. Migraine and tension headaches: a multi-modal approach to the prevention and control of headache pain. Nedlands (Western Australia): Self-Care Research Team, Clinical Unit, Dept. of Psychology, University of Western Australia; 1982.
   Google Scholar
• Aleligay A, Worrall LE, Rose TA. Readability of written health information provided to people with aphasia. Aphasiology. 2008;22(4):383–407.
   Web of Science ®Google Scholar
• Rose T, Worrall L, Hickson L, et al. Aphasia friendly written health information: content and design characteristics. Int J Speech Lang Pathol. 2011;13(4):335–347.
   PubMed Web of Science ®Google Scholar
• Golding K, Fife-Schaw C, Kneebone I. A pilot randomized controlled trial of self-help relaxation to reduce post-stroke depression. Clin Rehabil. 2018;32(6):747–751.
   PubMedGoogle Scholar
• Kneebone I, Walker-Samuel N, Swanston J, et al. Relaxation training after stroke: potential to reduce anxiety. Disabil Rehabil. 2014;36(9):771–774.
   PubMed Web of Science ®Google Scholar
• Kneebone II, Jeffries FW. Treating anxiety after stroke using cognitive-behaviour therapy: two cases. Neuropsychol Rehabil. 2013;23(6):798–810.
   PubMed Web of Science ®Google Scholar
• Barker-Collo SL. Depression and anxiety 3 months post stroke: prevalence and correlates. Arch Clin Neuropsychol. 2007;22(4):519–531.
   PubMed Web of Science ®Google Scholar
• Sagen U, Vik TG, Moum T, et al. Screening for anxiety and depression after stroke: comparison of the Hospital Anxiety and Depression Scale and the Montgomery and Asberg Depression Rating Scale. J Psychosom Res. 2009;67(4):325–332.
   PubMed Web of Science ®Google Scholar
• Linley‐Adams B, Morris R, Kneebone I. The behavioural outcomes of anxiety scale (BOA): a preliminary validation in stroke survivors. Br J Clin Psychol. 2014;53(4):451–467.
   PubMed Web of Science ®Google Scholar
• Archibald MM, Ambagtsheer RC, Casey MG, et al. Using zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participants. Int J Qual Methods. 2019;18:1609406919874596.
   Web of Science ®Google Scholar
• Palmer R, Dimairo M, Cooper C, et al. Self-managed, computerised speech and language therapy for patients with chronic aphasia post-stroke compared with usual care or attention control (big CACTUS): a multicentre, single-blinded, randomised controlled trial. Lancet Neurol. 2019;18(9):821–833.
   PubMed Web of Science ®Google Scholar
• Clarke V, Braun V. Using thematic analysis in counselling and psychotherapy research: a critical reflection. Couns Psychother Res. 2018;18(2):107–110.
   Web of Science ®Google Scholar
• Thirsk LM, Clark AM. Using qualitative research for complex interventions: the contributions of hermeneutics. Int J Qual Methods. 2017;16(1):160940691772106.
   Web of Science ®Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
   PubMed Web of Science ®Google Scholar
• Nowell LS, Norris JM, White DE, et al. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods. 2017;16(1):1609406917733847.
   Web of Science ®Google Scholar
• Amazon. Echo & Alexa devices; 2017. Available from: https://www.amazon.com/Amazon-Echo-And-Alexa-Devices/b?ie=UTF8&node=9818047011
   Google Scholar
• Moss B, Northcott S, Behn N, et al. ‘Emotion is of the essence … number one priority’: a nested qualitative study exploring psychosocial adjustment to stroke and aphasia. Int J Lang Commun Disord. 2021;56(3):594–608.
   PubMedGoogle Scholar
• Finlay KA, Hearn JH, Chater A. The impact of neurological disability and sensory loss on mindfulness practice. Disabil Rehabil. 2021. DOI:10.1080/09638288.2021.1887946
   PubMedGoogle Scholar
• Reza A, Esmail K, Somayeh J, et al. Effectiveness of group training of mindfulness-based techniques on improvement of psychological well-being of individuals with spinal cord injury. J Mod Rehabil. 2017;10(4):158–161.
   Google Scholar
• Scandola M, Togni R, Tieri G, et al. Embodying their own wheelchair modifies extrapersonal space perception in people with spinal cord injury. Exp Brain Res. 2019;237(10):2621–2632.
   PubMed Web of Science ®Google Scholar
• Eisen SV, Ranganathan G, Seal P, et al. Measuring clinically meaningful change following mental health treatment. J Behav Health Serv Res. 2007;34(3):272–289.
   PubMed Web of Science ®Google Scholar
• Hays R, Brodsky M, Johnston M, et al. Evaluating the statistical significance of health-related quality-of-life change in individual patients. Eval Health Prof. 2005;28(2):160–171.
   PubMedGoogle Scholar
• McHorney CA, Tarlov AR. Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res. 1995;4(4):293–307.
   PubMed Web of Science ®Google Scholar
• Wyrwich K, Wolinsky F. Identifying meaningful Intra-Individual change standards for health-related quality of life measures. J Eval Clin Pract. 2000;6(1):39–49.
   PubMed Web of Science ®Google Scholar
• Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLOS Med. 2011;8(1):e1000393.
   PubMed Web of Science ®Google Scholar
• Menger F, Morris J, Salis C. Aphasia in an internet age: wider perspectives on digital inclusion. Aphasiology. 2016;30(2–3):112–132.
   Web of Science ®Google Scholar
• Michie S, Atkins L, West R. The behaviour change wheel. A guide to designing interventions. 1st ed. London (UK): Silverback Publishing; 2014. p. 1003–1010.
   Google Scholar
• Thomas SA, Walker MF, Macniven JA, et al. Communication and low mood (CALM): a randomized controlled trial of behavioural therapy for stroke patients with aphasia. Clin Rehabil. 2013;27(5):398–408.
   PubMed Web of Science ®Google Scholar
• Northcott S, Simpson A, Thomas SA, et al. Solution focused brief therapy in post-stroke aphasia (SOFIA trial): protocol for a feasibility randomised controlled trial. AMRC Open Res. 2019;1:11.
   Google Scholar
• Ryan B, Hudson K, Worrall L, et al. The aphasia action, success, and knowledge programme: results from an Australian phase I trial of a speech-pathology-led intervention for people with aphasia early post stroke. Brain Impairment. 2017;18(3):284–298.
   Web of Science ®Google Scholar