Aphasia and Evidence-Based Methods to Facilitate Informed Consent to Stroke Care and Research: It’s Possible!

European Life After Stroke Forum 2024, Dublin

CLICK HERE to download the poster.

Decision-Making Stages and Communication Support Methods

CLICK HERE to download the stages of decision making.

Guidelines for the Development of Aphasia-Friendly Documents to Support Informed Consent Discussions

The process required to ensure an ‘informed consent’ requires a discussion, whether the consent is to a healthcare procedure, to participate in a research project, or to enter into any other significant agreement.   This discussion must ensure that all relevant information is understood, important questions are answered, and significant decision factors including values are addressed.  Additionally, the choice must be voluntary and authentic, and conveyed accurately.

For a person with aphasia to have these in-depth conversations, the information must be presented in an ‘aphasia-friendly’ way.  Support materials that assist both the understanding of spoken and written information and the expression of verbal messages, need to be designed with specific principles in mind. 

  1.  All support materials are used in the context of a supported conversation. The support materials are not designed to stand alone as a means to convey information.
  2.  Spoken information from conversation partners should be adapted according to evidence-based strategies, using Supported Conversation for Adults with Aphasia (SCA™), or a similar method.
  3. Visual supports used to assist the understanding of spoken information and the expression of verbal messages, should be designed using ‘aphasia-friendly’ techniques.
    • Language: More common vocabulary, shorter sentences, simpler grammar; adult, appropriate language
    • Fonts: Larger size, bold format for key words
    • Page Titles: Key Words to convey the main concepts
    • Layout: Increased white space, fewer concepts per page
    • Illustrations: Add visual images to convey complex ideas; images should focus on the main ideas without extraneous detail
  4. To ensure that all necessary information is sufficiently well understood to allow a fully informed consent, the inclusion of a ‘teach-back’ step at the end of the discussion is encouraged.

Sample Pages from an Aphasia Friendly Informed Consent Support Document

Here are four initial pages included to demonstrate the aphasia-friendly document design principles:

  • Page one – The idea of a decision regarding a research project is introduced.
  • Page two – The research setting is introduced.  More details would follow on subsequent pages.
  • Page three – The subject selection criteria is introduced.  More details would follow on subsequent pages.
  • Page four – The concept of video recording is introduced and privacy of recorded material is explained.

CLICK HERE to download the Guideline for the Development of Aphasia-Friendly Documents to Support Informed Consent Discussions.

Communicative Access and Supported Conversation for Adults with Aphasia (SCATM)

Supported Conversation for Adults With Aphasia (SCA™) is an evidence-based communication method developed by the Aphasia Institute that can facilitate the understanding and expression of spoken and written messages, as well as demonstrate respect for the competence of the person with aphasia. The guiding principle for this method is that the language barrier in aphasia can be circumvented with the use of individualized techniques and tools designed to enable conversation on simple and complex topics.

SCA™ is designed to help people who “know more than they can say” express their opinions and feelings in a way allows them to be understood and makes them feel valued and respected.  By using the SCA™ method, conversation partners (such as, doctors, nurses, family members, or friends) can help break down the communication barriers and help people with aphasia engage in all types of  conversations, including decision-making conversations.

SCA™ is designed to help people who “know more than they can say” express their opinions and feelings in a way allows them to be understood and makes them feel valued and respected.  By using the SCA™ method, conversation partners (such as, doctors, nurses, family members, or friends) can help break down the communication barriers and help people with aphasia engage in all types of  conversations, including decision-making conversations.

CLICK HERE for our FREE: Introduction to SCA™ eLearning Module

CLICK HERE for our FREE resources on Talking to Your Family Member/Friend with Aphasia: Conversation Basics

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Short Summary of SCATM Techniques

CLICK HERE to download the PDF of the Short Summary of SCATM Techniques

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The Goals of SCATM

  1.  Acknowledge the Competence of the Adult with Aphasia.​
  2.  Help the Adult with Aphasia to Reveal his or her Competence.

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Acknowledge Competence

People with aphasia need others to believe they are competent and have more understanding and social skills than may be apparent.​

Acknowledging competence can be accomplished through using a tone of voice that is natural, choosing adult or complex topics for discussion, and integrating techniques into natural talk.  Helpful strategies include:

  • Saying “I know that you know” at appropriate times.
  • Attributing communication breakdowns to your limitations as a communicator, “You know I’m not good at explaining these things clearly!”
  • Dealing openly when you have to communicate with a partner to obtain or give information.
  • Despite your best efforts, there will be times when communication breaks down – it is valid and comforting to acknowledge the shared experience of being frustrated.

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Revealing Competence

Message IN

  • There are communication techniques that can help ease the exchange of information and feelings between the conversation partner and the person with aphasia.
  • Getting the message IN is a matter of modifying the way you converse to ensure you are being understood by the person with aphasia.  Some methods to try include:
    • Using short, simple sentences and an expressive voice.​
    • Using gestures when conversing.​
    • Writing down keywords or topics, so that you can both see them together – e.g., PLAIN, in large, bold print.​
    • Using pictures to illustrate an idea, and focusing on one picture at a time.​
    • Eliminating distraction – noises, other people, or multiple visual materials.​
    • Observing the person’s facial expression, eye gaze, body posture or gestures to determine their level of comprehension.

Message OUT

  • Getting the message OUT might be a bigger challenge for someone with aphasia.  To help them express their thoughts to you, try:
    • Asking yes or no questions.​
    • Asking one question at a time.​
    • Asking fixed choice questions such as, “Do you want water or coffee?”​
    • Phrasing yes or no questions from general to specific.​
    • Asking him/her to gesture, point to objects or pictures, or write key words, such as “Can you show me…”​
    • Giving him/her sufficient time to respond.

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Revealing Competence – VERIFY the Message

  • Verifying the message is important to making the person with aphasia feel understood and valued.  Summarize slowly and clearly by saying, “So let me make sure I understand” and using the following methods:
    • Adding gestures or written key words.​
    • Repeating the person’s message.​
    • Expanding on what you think the person might be trying to say.​
    • Recapping the conversation if it was a long one.

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Informed Consent Forms

References

Decision Making

Carling-Rowland, A., Black, S., McDonald, L., and Kagan, A. (2014) Increasing access to fair capacity evaluation for discharge decision-making for people with aphasia: a randomised controlled trial. Aphasiology, 28 (6), 750-765.

Ferguson, A., Duffield, G., and Worrall, L. (2010) Legal decision-making by people with aphasia: critical incidents for speech pathologists. International Journal of Language and Communication Disorders, 45 (2), 244-258.

Kagan, A., Shumway, E., and MacDonald, S. (2020) Assumptions about decision-making capacity and aphasia: ethical implications and impact.  Seminars in Speech and Language, 40 (3), 221-231.

Stipinovich, A.M., Tonsing, K., Dada, S. (2023) Communication strategies to support decision-making by persons with aphasia: a scoping review.  International Journal of Language and Communication Disorders, 6, 1955-1976.

Informed Consent

Dalemans, R. Wade, D.T., van den Heuvel, W.J.A., de Witte, L.P. (2009) Facilitating the participation of people with aphasia in research: a description of strategies. Clinical Rehabilitation, 23, 948-959.

Jayes, M. and Palmer, R. (2013) 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.  International Journal of Speech-Language Pathology, 16 (2), 159-169.

Penn, C., Frankel, T., Watermeyer, J. and Muller, M. (2009) Informed consent and aphasia: evidence of pitfalls in the process.  Aphasiology, 23 (1), 3-32.

Shiggins, C., Ryan, B., O’Halloran, R., Power, E., Bernhardt, J., Lindley, R., McGurk, G., Hankey, G., Rose, M.L. (2022) Towards the Consistent Inclusion of People with Aphasia in Stroke Research Irrespective of Discipline. Archives of Physical Medicine and Rehabilitation, 103, 2256-2263.

Stein, J. and Brady Wagner, L.C. (2006) Is informed consent a “yes” or “no” response? Enhancing the shared decision-making process for people with aphasia.  Topics in Stroke Rehabilitation, 13 (4), 42-46.

Supported Conversation for Adults with Aphasia (SCA) and Communication Partner Training

Kagan, A. (1998) Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology, 12 (9), 816–830.

Kagan, A., Simmons-Mackie, N., and Victor, J. C. (2018)  The impact of exposure with no training: implications for future partner training research. Journal of Speech, Language, and Hearing Research, 61, 2347-2352.

Legg, C., Young, L., and Bryer, A. (2005) Training sixth-year medical students in obtaining case-history information from adults with aphasia. Aphasiology, 19 (6), 559-575.

Power, E., Falkenberg, K., Barnes, S., Elbourn, E., Attard, M., and Togher, L. (2020) A pilot randomized controlled trial comparing online versus fact-to-face delivery of an aphasia communication partner training program for student healthcare professionals.  International Journal of Language and Communication Disorders, 55 (6), 852-866

Aphasia Friendly Resources

Briffa C., Sullivan, R., Murray, J., van den Berg, M. (2023) Providing aphasia-friendly information in the healthcare setting: Applying the Theoretical Domains Framework to identify factors that influence speech pathologist’s self-reported practice. Aphasiology, 37 (9), 1335-1362.

Rose, T.A., Worrall, L. E.,  Hickson, L.M., and Hoffman, T.C. (2011) Aphasia friendly written health information: content and design characteristics. International Journal of Speech-Language Pathology, 13 (4), 335-347

Teach Back

Anderson, K.M., Leister, S., De Rego, R.The 5Ts for Teach Back: An Operational Definition for Teach-Back Training (2020) Health Literacy Research and Practice, 4 (2), e94-e103

Epstein, H.B. (2023) The Teach-Back Method to Build Patient’s Health Literacy. Journal of Consumer Health on the Internet.  27 (3), 328-334.

Seely, K.D., Higgs, J.A., Nigh, A. (2022) Utilizing the “teach-back” method to improve surgical informed consent and shared decision-making: a review. Patient Safety in Surgery, 16 (12), 1-9

Sleiman, A., A., Gravina, N.E., Portillo, D. (2023) An evaluation of the teach-back method for training new skills. Journal of Applied Behaviour Analysis, 56, 117-130

Talevsky, J., Wong, S.A., Rasmussen, B., Kemp. G., Beauchamp, A. (2020) Teach-back: a systematic review of implementation and impacts. PLoS One. 15:e0231350.

United Nations Convention on the Rights of Persons with Disabilities, 2006

https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities

"My experience with the SCATM training has been an amazing experience in both skill building and knowledge and understanding of persons who are affected by Aphasia – The teaching team at AI are excellent examples of professionals and compassionate teachers. Highly recommend this training."
- Lorraine Pyle, CCSH Belleville, ON
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