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Towards the Consistent Inclusion of People With Aphasia in Stroke Research Irrespective of Discipline

  • Ciara Shiggins
    Correspondence
    Corresponding author Dr Ciara Shiggins, Centre of Research Excellence in Aphasia Recovery and Rehabilitation, La Trobe University, Bundoora, Melbourne 3086, Australia.
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia

    Queensland Aphasia Research Centre, The University of Queensland, Brisbane, Australia

    School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia

    School of Health Sciences, University of East Anglia, Norwich, Norfolk, UK
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  • Brooke Ryan
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    University of Technology Sydney, Graduate School of Health, Clinical Psychology, Ultimo, NSW 2007, Australia

    Speech Pathology, Curtin School of Allied Health, Curtin University, Perth, Australia
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  • Robyn O'Halloran
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia
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  • Emma Power
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    University of Technology Sydney, Graduate School of Health, Speech Pathology, Ultimo, NSW 2007, Australia
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  • Julie Bernhardt
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    Director, NHMRC Centre of Research Excellence Stroke Rehabilitation and Brain Recovery & Co-Head of Stroke Theme, Florey Institute of Neuroscience and Mental Health, University of Melbourne, Australia
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  • Richard I. Lindley
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    Westmead Applied Research Centre; Faculty of Medicine and Health, University of Sydney, Sydney, Australia
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  • Gordon McGurk
    Affiliations
    Human Research Ethics Committee, Royal Brisbane and Women's Hospital

    Human Research Ethics Committee A, University of Queensland

    Human Research Ethics Committee, Townsville Hospital and Health Service

    OmniAdvisory Consulting
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  • Graeme J. Hankey
    Affiliations
    Medical School, Faculty of Health & Medical Sciences, The University of Western Australia, Australia
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  • Miranda L. Rose
    Affiliations
    Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Australia

    School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, Australia
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      Abstract

      People with aphasia have been systematically excluded from stroke research or included without the necessary modifications, threatening external study validity. In this paper, we propose that 1) the inclusion of people with aphasia should be considered as standard in stroke research irrespective of discipline and that 2) modifications should be made to stroke research procedures to support people with aphasia to achieve meaningful and valid inclusion. We argue that outright exclusion of this heterogenous population from stroke research based purely on a diagnosis of aphasia is rarely required and present a rationale for deliberate inclusion of people with aphasia in stroke research. The purpose of this paper is fourfold: 1) to highlight the issue and implications of excluding people with aphasia from stroke research; 2) to acknowledge the current barriers to including people with aphasia in stroke research; 3) to provide stroke researchers with methods to enable inclusion, including recommendations, resources, and guidance; and 4) to consider research needed to develop aphasia inclusive practices in stroke research.

      Keywords

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      References

        • Johnson CO
        • Nguyen M
        • Roth GA
        • et al.
        Global, regional, and national burden of stroke, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.
        Lancet Neurol. 2019; 18: 439-458
        • Rajsic S
        • Gothe H
        • Borba HH
        • et al.
        Economic burden of stroke: a systematic review on post-stroke care.
        Eur J Heal Econ. 2019; 20: 107-134
        • 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: 2188-2201
        • Papathanasiou I
        • Coppens P
        • Potagas C
        Aphasia and related neurogenic communication disorders.
        2nd ed. Jones & Bartlett Publishers, Burlington, MA2016
        • Chapey R
        Language intervention strategies in aphasia and related neurogenic communication disorders.
        (editor.)5th ed. Lippincott Williams & Wilkins, Philadelphia2012
        • Bersano A
        • Burgio F
        • Gattinoni M
        • Candelise L.
        Aphasia burden to hospitalised acute stroke patients: need for an early rehabilitation programme.
        Int J Stroke. 2009; 4: 443-447
        • Boehme AK
        • Martin-Schild S
        • Marshall RS
        • Lazar RM.
        Effect of aphasia on acute stroke outcomes.
        Neurology. 2016; 87: 2348-2354
        • Lazar RM
        • Boehme AK.
        Aphasia as a predictor of stroke outcome.
        Curr Neurol Neurosci Rep. 2017; 17: 1-5
        • Dickey L
        • Kagan A
        • Lindsay MP
        • Fang J
        • Rowland A
        • Black S.
        Incidence and profile of inpatient stroke-induced aphasia in Ontario, Canada.
        Arch Phys Med Rehabil. 2010; 91: 196-202
        • Northcott S
        • Moss B
        • Harrison K
        • Hilari K.
        A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change.
        Clin Rehabil. 2016; 30: 811-831
        • Hilari K
        • Northcott S
        • Roy P
        • et al.
        Psychological distress after stroke and aphasia: the first six months.
        Clin Rehabil. 2010; 24: 181-190
        • Morris R
        • Eccles A
        • Ryan B
        • Kneebone II.
        Prevalence of anxiety in people with aphasia after stroke.
        Aphasiology. 2017; 31: 1410-1415
        • Bakas T
        • Kroenke K
        • Plue LD
        • Perkins SM
        • Williams LS.
        Outcomes among family caregivers of aphasic versus nonaphasic stroke survivors.
        Rehabilitation Nursing. 2006; 31: 33-42
        • 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: 1-17
        • Baker C
        • Worrall L
        • Rose M
        • Hudson K
        • Ryan B
        • O'Byrne L.
        A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia.
        Disabil Rehabil. 2018; 40: 1870-1892
        • McGrath M
        • Lever S
        • McCluskey A
        • Power E.
        How is sexuality after stroke experienced by stroke survivors and partners of stroke survivors? A systematic review of qualitative studies.
        Clin Rehabil. 2019; 33: 293-303
        • Brady MC
        • Fredrick A
        • Williams B.
        People with aphasia: capacity to consent, research participation and intervention inequalities.
        Int J Stroke. 2013; 8: 193-196
        • Rothwell PM.
        External validity of randomised controlled trials: “to whom do the results of this trial apply?.
        Lancet. 2005; 365: 82-93
        • Ali M
        • Bath PM
        • Lyden PD
        • Bernhardt J
        • Brady M.
        Representation of people with aphasia in randomized controlled trials of acute stroke interventions.
        Int J Stroke. 2014; 9: 174-182
        • Tudor Hart J
        The Inverse Care Law.
        Lancet. 1971; 297: 405-412
      1. National Health and Medical Research Council, Australian Research Council and Universities AustraliaNational Statement on Ethical Conduct in Human Research 2007 (Updated 2018). Canberra, Australia: National Health and Medical Research Council; 2018

        • United Nations General Assembly
        Universal Declaration of Human Rights.
        art 1, Paris1948 (Available at:) (Accessed June 11, 2022)
        • Office of the Queensland Parliamentary Counsel
        Human Rights Act.
        2019 (Available at:) (Accessed June 11, 2022)
        • McEwin A
        • Santow E
        The importance of the human right to communication.
        Int J Speech Lang Pathol. 2018; 20: 1-2
        • Hersh D.
        Participants, researchers and participatory research.
        J Clin Pract Speech-Language Pathol. 2014; 16: 123-126
        • Rudberg AS
        • Berge E
        • Laska AC
        • et al.
        Stroke survivors’ priorities for research related to life after stroke.
        Top Stroke Rehabil. 2020; 28: 1-6
        • Elkins JS
        • Khatabi T
        • Fung L
        • Rootenberg J
        • Johnston SC.
        Recruiting subjects for acute stroke trials: a meta-analysis.
        Stroke. 2006; 37: 123-128
        • Department of Health
        Mental Capacity Act.
        HSMO, London2007
        • Penn C
        • Frankel T
        • Watermeyer J
        • Müller M.
        Informed consent and aphasia: evidence of pitfalls in the process.
        Aphasiology. 2009; 23: 3-32
      2. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Rockville: The Commission: Department of Health, Education, and Welfare; 1978.

        • McCormick M
        • Bose A
        • Marinis T.
        Decision-making capacity in aphasia: SLT's contribution in England.
        Aphasiology. 2017; 31: 1344-1358
        • Kagan A
        • Kimelman MDZ.
        Informed consent in aphasia research: myth or reality.
        Clin Aphasiology. 1995; 23 (Vol. 23): 65-75
        • Carling-Rowland A
        • Black S
        • McDonald L
        • Kagan A.
        Increasing access to fair capacity evaluation for discharge decision-making for people with aphasia: a randomised controlled trial.
        Aphasiology. 2014; 28: 750-765
        • Jayes M
        • Palmer R.
        Initial evaluation of the Consent Support Tool: a structured procedure to facilitate the inclusion and engagement of people with aphasia in the informed consent process.
        Int J Speech Lang Pathol. 2014; 16: 159-168
        • Mackenzie JA
        • Lincoln NB
        • Newby GJ.
        Capacity to make a decision about discharge destination after stroke: a pilot study.
        Clin Rehabil. 2008; 22: 1116-1126
        • Stein J
        • Wagner LCB
        Is informed consent a “yes or no” response? Enhancing the shared decision-making process for persons with aphasia.
        Top Stroke Rehabil. 2006; 13: 42-46
        • Hotter B
        • Ulm L
        • Hoffmann S
        • et al.
        Selection bias in clinical stroke trials depending on ability to consent.
        BMC Neurol. 2017; 17: 1-7
      3. United Nations. Convention on the rights of persons with disabilities. Geneva: United Nations; 2006.

        • Kompanje EJO
        • Dijck JTJM Van
        • Chalos V
        • et al.
        Personal view informed consent procedures for emergency interventional research in patients with traumatic brain injury and ischaemic stroke.
        Lancet Neurol. 2020; 19: 1033-1042
        • Luck AM
        • Rose ML.
        Interviewing people with aphasia: insights into method adjustments from a pilot study.
        Aphasiology. 2007; 21: 208-224
        • Hoffmann T
        • Worrall L
        • Eames S
        • Ryan A.
        Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?.
        Top Stroke Rehabil. 2010; 17: 119-127
        • Holbrook AL
        • Green MC
        • Krosnick JA.
        Telephone versus face-to-face interviewing of national probability samples with long questionnaires: comparisons of respondent satisficing and social desirability response bias.
        Public Opin Q. 2003; 67: 79-125
        • Drummond A
        • Hawkins L
        • Sprigg N
        • et al.
        The Nottingham Fatigue after Stroke (NotFAST) study: factors associated with severity of fatigue in stroke patients without depression.
        Clin Rehabil. 2017; 31: 1406-1415
        • Worrall L
        • Rose T
        • Howe T
        • McKenna K
        • Hickson L.
        Developing an evidence-base for accessibility for people with aphasia.
        Aphasiology. 2007; 21: 124-136
        • Rose TA
        • Worrall LE
        • Hickson LM
        • Hoffmann TC.
        Exploring the use of graphics in written health information for people with aphasia.
        Aphasiology. 2011; 25: 1579-1599
        • Kagan A.
        Supported conversation for adults with aphasia: methods and resources for training conversation partners.
        Aphasiology. 1998; 12: 816-830
        • Simmons-Mackie N
        • Raymer A
        • Cherney LR.
        Communication partner training in aphasia: an updated systematic review.
        Arch Phys Med Rehabil. 2016; 97: 2202-2221
        • Ryan H
        • Heywood R
        • Jimoh O
        • et al.
        Inclusion under the Mental Capacity Act (2005): a review of research policy guidance and governance structures in England and Wales.
        Heal Expect. 2021; 24: 152-164
        • Dunn LB
        • Jeste D V
        Enhancing informed consent for research and treatment.
        Neuropsychopharmacology. 2001; 24: 595-607
        • Zuscak SJ
        • Peisah C
        • Ferguson A.
        A collaborative approach to supporting communication in the assessment of decision-making capacity.
        Disabil Rehabil. 2016; 38: 1107-1114
        • Kane I
        • Lindley R
        • Lewis S
        • Sandercock P.
        Impact of stroke syndrome and stroke severity on the process of consent in the third international stroke trial.
        Cerebrovasc Dis. 2006; 21: 348-352
        • Brady Wagner LC
        Ethical framework of supporting medical decision making for persons with aphasia.
        Perspect ASHA Spec Interest Groups. 2018; 3: 80-87
        • Palmer R
        • Jayes M.
        The consent support tool: including people with communication disorders in health research studies.
        J & R Press, Havant2020
        • Wallace SJ
        • Worrall L
        • Le Dorze G
        • Brandenburg C
        • Foulkes J
        • Rose TA
        Many ways of measuring: a scoping review of measurement instruments for use with people with aphasia.
        Aphasiology. 2020; 36: 401-466
      4. World Health Organization. The International Classification of Functioning, Disability and Health.
        Geneva: World Health Organisation;. 2001;
        • Hilari K
        • Behn N
        • Marshall J
        • et al.
        Adjustment with aphasia after stroke: study protocol for a pilot feasibility randomised controlled trial for SUpporting wellbeing through PEeR Befriending (SUPERB).
        Pilot Feasibility Stud. 2019; 5: 1-16
        • Tucker FM
        • Edwards DF
        • Mathews LK
        • Baum CM
        • Connor LT.
        Modifying health outcome measures for people with aphasia.
        Am J Occup Ther. 2012; 66: 42-50
        • Kagan A
        • Black SE
        • Felson Duchan J
        • Simmons-Mackie N
        • Square P
        Training volunteers as conversation partners using “Supported Conversation for Adults with Aphasia” (SCA): a controlled trial.
        J Speech Lang Hear Res. 2001; 44: 624-638
      5. Speech Pathology Australia. Professional Standards for Speech Pathologists in Australia. 2020. Available at:https://www.speechpathologyaustralia.org.au/SPAweb/Resources_For_Speech_Pathologists/Professional_Standards/Professional_Standards/SPAweb/Resources_for_Speech_Pathologists/CBOS/Professional_Standards.aspx?hkey=583a56af-74e0-4111-95fa-656502269967. Accessed June 11, 2022.

        • Shiggins C
        • Soskolne V
        • Olenik D
        • et al.
        Towards an asset-based approach to promoting and sustaining well-being for people with aphasia and their families: an international exploratory study.
        Aphasiology. 2020; 34: 70-101
        • Bernhardt J
        • Borschmann KN
        • Kwakkel G
        • et al.
        Setting the scene for the second stroke recovery and rehabilitation roundtable.
        Int J Stroke. 2019; 14: 450-456
        • Penn C
        • Armstrong E
        Intercultural aphasia: new models of understanding for Indigenous populations.
        Aphasiology. 2017; 31: 563-594
        • Rios D
        • Magasi S
        • Novak C
        • Harniss M.
        Conducting accessible research: Including people with disabilities in public health, epidemiological, and outcomes studies.
        Am J Public Health. 2016; 106: 2137-2144
        • McGinley M
        • Horne SG.
        An ethics of inclusion: recommendations for LGBTQI research, practice, and training.
        Psychol Russ State Art. 2020; 13: 54-69
        • O'Halloran R
        • Douglas J
        • Cruice M
        • Davidson B
        • McKinley K
        • Bigby C.
        Representation and reporting of communicatively vulnerable patients in patient experience research.
        Int J Speech Lang Pathol. 2019; 21: 524-535
        • Phipps D
        • Pepler D
        • Craig W
        • Cummings J
        • Cardinal S.
        The co-produced pathway to impact describes knowledge mobilization processes.
        J Community Engagem Scholarsh. 2016; 9: 5
        • Michie S
        • Van Stralen Maartje M
        • West R
        The behaviour change wheel: a new method for characterising and designing behaviour change interventions.
        Implement Sci. 2011; 6: 42