.jpg)
What is health literacy?
The Centers for Disease Control and Prevention (CDC) (2020) and American Occupational Therapy Association (AOTA) (2011) agree:
health literacy is the degree to which individuals can find, understand and use information/services, to make well-informed health-related decisions and actions, in a manner that promotes health participation, autonomy and informed decision making.
Truly conceptualizing the activities associated with maintaining and improving health can support safe, informed choices, personal efficacy and being in control over personal health.
Is health literacy a national priority?
Yes! On August 18th 2020, the US Department of Health and Human Services (2020) released the nation’s 10-year Healthy People 2030 initiative, which envisions 'a society in which all people can achieve their full potential for health and well-being across the lifespan' (para. 2). One of the five major goals identified by this initiative is to 'eliminate health disparities, achieve health equity and attain health literacy…' (para. 5).
In the US, there are currently well over two million Augmentative and Alternative Communication (AAC) users, who have limited access to appropriate health documents. 'Augmentative means to add to someone’s speech. Alternative means to be used instead of speech', including the use of symbols instead of letters (ASHA, 2022). When health documents are not language appropriate, the ability to make informed healthcare decisions is greatly reduced.
Barriers to client-provider communication
All people have the right to explore and make supported, informed decisions about their health. However, many marginalized groups, including AAC users, are rarely given opportunities to appraise and apply their own knowledge to health information (DREDF, 2020; Joint Commission, 2010). This can be attributed to perceived cognitive abilities, differences in communication and level/type of literacy skills.
Studies have found that health care providers, including occupational therapy (OT) practitioners, felt ill-prepared to treat, communicate and interact with clients who communicate with symbols, due to limited knowledge and communication strategies (Sharby et al., 2015; Weil et al., 2011; Williamson et al., 2017).
As such, clients reported little or no participatory involvement, due to communication barriers, difficulty understanding medical information and lack of accessible education materials - resulting in difficulty trusting providers and feeling powerless (Sharby et al., 2015; Williamson et al., 2017). Healthcare providers should be trained and have the resources to facilitate productive communication that will improve the client’s long-term health outcomes, participation, and quality of life.
Current format
Patient Decision Aids (PDAs) are a health literacy tool used to help educate clients about conditions, procedures and treatment options (Appendix A). Research shows that PDAs lead to:
increased knowledge
more accurate understanding of risks versus benefits
improved client-provider communication
clients feeling more comfortable with the decisions they make and the care they receive
(Pope, 2017)
However, PDAs are currently only available using letters, which excludes people who communicate with symbols. Health literacy tools need to be accessible to people who use symbols to communicate - and healthcare providers should be trained to utilize them.
A new symbol-based format
To address this barrier, an initial symbol-based PDA on Carpal Tunnel Syndrome (CTS) and treatment options was created. This was accomplished through a collaborative process, with self-advocates, content experts, the Institute on Development and Disability, Community Vision AT Lab and a WITH Foundation grant. CTS was chosen by AAC users, as this is a common condition they experience. Two options were created: AAC based and Universal Design (Appendix A).
Symbol-based PDAs would be used similarly to how traditional PDAs are currently used between patients and providers - as a supplement. When utilizing symbol-based PDAs, it is also important to include the patient’s system of support, as they deem necessary. For example: family, friend, partner, interpreter and/or Speech Pathologist. This improves the translation/understanding of health information and increases informed decision making.
Our process
Create an advisory group, consisting of a target population
Identify a pertinent/specific health topic
Gather accurate information related to the chosen health topic
Select the type/style of symbols; if needed, collaborate with a graphic designer who understands the needs of the populations and how to make language-based symbols
Gather feedback from an advisory group, consisting of your target population
Consult with content experts on accuracy, thoroughness and value
Repeat the feedback process
The Carpal Tunnel symbol-based PDA was anonymously reviewed by 45 content experts, from 17 US states and Toronto. They provided feedback on accuracy and value of the document. 39% included OTs, physiotherapists (PTs), Certified Hand Therapists, MDs and various nursing providers; 36% worked in patient education. Content experts and AAC users identified the following as important things to consider when creating symbol-based PDAs:
Size, type and quantity of symbols used
Thoroughly user-tested PDA, with diverse audiences prior to dissemination
Keeping the PDA concise and pertinent
Having a plan for how to use - and what other resources to pair with it
AAC user perspective
Prior to the development of this symbol-based PDA, a member of the advisory group felt she could not fully conceptualize nor express her preferences, due in part to lack of accessible healthcare documents. She feared Carpal Tunnel surgery, because she was unsure what it entailed, what her options were, or if it would elevate her pain. She said:
"I am a person who uses AAC and I had surgery for Carpal Tunnel Syndrome, because of overuse of my hand on my communication device. Unfortunately for me, my Carpal Tunnel Release was performed a few years before this PDA was made. Looking back on the time before surgery, I was beside myself with a worry I couldn't fully express, because I didn't know what I would be experiencing after the surgery. If I had this symbol-based PDA before my procedure, I would have had talking points and information all laid out for me. This would have helped me by pinpointing my fears. I would have liked to have known what my options were. For example, I didn't know that there were shots that would reduce pain. I also didn't realize there were two types of Carpal Tunnel Releases. I, for sure, would have picked the Endoscopic operation. Maybe my insurance only covered the Open surgery and that is why I never got a choice. I am thrilled that I worked on this grant, so that other people like me will be better prepared than I was."
Following the development of this symbol-based PDA, she expressed that it clearly outlines talking points and treatment options about the condition and helps to pinpoint concerns. With this symbol-based PDA, she would have been better able to understand her options and identify preferences - in order to make an informed choice that impacts her health, now and in the future.
Photo by Evidently Cochrane
Occupational therapy's role
The 2020 AOTA statement on Occupational Therapy in the Promotion of Health and Well-Being recognizes the ethical responsibility OT practitioners have to evolve our knowledge base, including 'being cognizant of and ready to address health literacy' (Reitz and Scaffa; 2020, p. 7). Participation in healthcare is an essential occupation, that impacts other daily activities; clients should have a method for understanding health information and making informed health decisions.
The Health Literacy Skills Framework (HLS) and the Supported Decision-Making Model (SDM) are approaches OT practitioners can utilize, to analyze communication/literacy skills, preferences, external factors and demands of the health task; all of these elements influence health literacy and informed decision making. To facilitate this process, we must engage in client-provider collaborations, through all phases of decision‐making, treatment preferences and agreement on plan of care. With a guiding framework, OT practitioners can identify communication needs and appropriate/accessible tools that meet client needs.
As members of the healthcare team, OT practitioners must ensure clients are provided with tools to participate in their healthcare, including making informed decisions about procedures and treatments. OT practitioners can assist with selecting appropriate AAC, identifying barriers to integrating AAC and creating/utilizing new communication tools, such as these symbol-based PDAs.
Health literacy-focused interventions are needed to promote effective client-provider communication and empower clients to communicate preferences and make informed choices that impact quality of life.
Appendix A
For the entire symbol-based document, templates and process visit University Center for Excellence in Developmental Disabilities.
Symbol-based PDA (page 1) vs Text-based PDA (page 1)
Our vision
We visualize a health care system that is communication accessible to all. Healthcare providers have tools for universal use that are easily accessible. Knowledge is shared to empower AAC users, those who communicate with symbols and disability communities. We want all people to feel heard, understood and supported, to make safe informed decision about their health and well-being.
Collaborative project
OHSU Institute on Development and Disability
Melanie Fried-Oken (PI), PhD, CCC-SLP
Kim Solondz, MS, OTR/L
Rhonda Eppelsheimer, MSW
Jan Staehely, Communications Assistant
Community Vision AT Lab
Kim Elliott, MS, CCC-SLP, ATP
Carrie Luse, MSR, OT/L, ATP
Project funded by a grant from the WITH Foundation.
References
American Occupational Therapy Association [AOTA] (2011). AOTA’s societal statement on health literacy. American Journal of Occupational Therapy, 65, S78-S79. Available from: https://doi.org/10.5014/ajot.2011.65S78.
American Speech-Language-Hearing Association [ASHA] (2022). Augmentative and Alternative Communication (AAC). Available from: https://www.asha.org/public/speech/disorders/aac.
Center for Disease Protection and Control [CDC] (2020). What is health literacy? Available from: https://www.cdc.gov/healthliteracy/learn/index.html.
Disability Rights Education and Defense Funds [DREDF] (2022). DREDF Comments on the 2022 Section 1557 Proposed Rule on Nondiscrimination in Health Programs and Activities. Available from: https://dredf.org/2022/10/04/dredf-comments-on-the-2022-section-1557-proposed-rule-on-nondiscrimination-in-health-programs-and-activities/.
Joint Commission (2010). Advancing Effective Communication, Cultural Competence and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL.
Pope, T.M. (2017). Certified client decision aids: Solving persistent problems with informed consent law. Journal of Law, Medicine and Ethics, 45(1), 12-40. Available from: http://doi.org/10.1177/1073110517703097. PMID: 28661276.
Reitz, S. M. and Scaffa, M. E. (2020). Occupational therapy in the promotion of health and well-being. American Journal of Occupational Therapy, 74, 7403420010. Available from: https://doi.org/10.5014/ajot.2020.743003.
Sharby, N., Martire, K. and Iversen, M. D. (2015). Decreasing health disparities for people with disabilities through improved communication strategies and awareness. International Journal of Environmental Research and Public Health, 12, 3301-3316. Available from: http://doi.org/10.3390/ijerph120303301.
United States Department of Health and Human Services (2020). Healthy people 2030 framework. Available from: https://health.gov/healthypeople/about/healthy-people-2030-framework.
Weil, T. N., Bagramian, R. A. and Inglehart, M. R. (2011). Treating clients with autism spectrum disorder - SCDA members’ attitudes and behavior. Special Care in Dentistry, 31, 8-17. Available from: https://doi.org/10.1111/j.1754-4505.2010.00173.x.
Williamson, H. J., Contreras, G. M., Rodriguez, E. S., Smith, J. M. and Perkins, E. A. (2017). Health care access for adults with intellectual and developmental disabilities: A scoping review. Occupational Therapy Journal of Research, 37(4), 227-236. Available from: http://doi.org/10.1177/1539449217714148.