The document discusses challenges in communicating pain experiences due to language barriers and limitations of current pain assessment tools, and proposes that visual representations of pain concepts could help address these issues by conveying meanings in a more intuitive, language-independent manner. Workshops exploring visual pain metaphors revealed them to be an effective way to describe distinct yet related pain sensations, suggesting visual tools may improve understanding of pain experiences across linguistic and cultural divides.
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Visualizing Pain: Overcoming Language Barriers
1. Lessons learned from visualizing pain.
What we can learn from communicating the complex.
Kelly Park @gwkellypark
#BigD18
Big Design Conference
September 21, 2018
2. Think about your experiences of physical pain.
• What is your earliest memory of physical pain?
• What is the worst physical pain you remember?
• What is your most recent experience with pain?
• Think of a time when you have seen a loved one experience pain.
• When and how do you communicate pain to others (such as doctors)?
• What does pain communicate to us?
3. Now, think about your experiences of language barrier.
• When do you experience a language barrier?
• What is your most recent experience with the language barrier?
How did you overcome it?
• What kind of emotions do you feel when you encounter the
language barrier?
• What negative effects of language barrier have you encountered?
4. Our experiences with pain are universal, yet unique.
• Pain affects more Americans than diabetes, heart disease and
cancer combined.
• Pain is the most common reason Americans access the health care
system.
• Chronic pain is the most common cause of long-term disability
and is a major contributor to health care costs.
From https://www.report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=57
5. Language barriers at home are compounded in healthcare settings.
D I S C O V E R I N G T H E P R O B L E M
20% (1 in 5) of Americans speak a language other than English at home.
40% of this population are considered Limited English Proficiency (LEP).
ENGLISH PROFICIENCYLANGUAGE SPOKEN AT HOME
20% 40%
1 in 5 Americans
speak a language
other than English
at home.
6. Language barriers at home are compounded in healthcare settings.
D I S C O V E R I N G T H E P R O B L E M
20% (1 in 5) of Americans speak a language other than English at home.
40% of this population are considered Limited English Proficiency (LEP).
ENGLISH PROFICIENCYLANGUAGE SPOKEN AT HOME
20% 40%
1 in 5 Americans
speak a language
other than English
at home.
40% of this population
are considered
Limited English Proficiency (LEP).
7. • Muscle rigidity
• Abdominal pain
• Joint pain
• Numbness
• Tingling
• Burning
• Dizziness
U N D E R S TA N D I N G PA I N
Parkinson’s Disease symptoms are difficult to put into words,
even for native English speakers.
William Richard Gowers (1886)
8.
9.
10. Technological solutions are limited.
D I S C O V E R I N G T H E P R O B L E M
Inaccurate Accurate
Chinese
German
Urdu
Swahili
Portuguese
Spanish
Vietnamese
French
Korean
Adequate
11. Technological solutions are limited.
discovering the problem
76% 24%
Inaccurate Accurate
Chinese
German
Urdu
Swahili
Portuguese
Spanish
Vietnamese
French
Korean
Adequate
11% 89%
12. Technological solutions are limited.
discovering the problem
Inaccurate Accurate
Chinese
German
Urdu
Swahili
Portuguese
Spanish
Vietnamese
French
Korean
Adequate
76% 24%
11% 89%
50%
37%
32%
32%
21%
16%
5%
50%
63%
68%
63%
42%
47%
74%
5%
37%
37%
74%21%
13. C O M P L E X
U N I V E R S A L
S U B J E C T I V E
PA I N I S
14. C O M P L E X
M Y S T E R I O U S
S U B J E C T I V E
PA I N I S
15. C O M P L E X
U N I V E R S A L
S U B J E C T I V EPA I N I S
16. C O M P L E X
U N I V E R S A L
S U B J E C T I V E
PA I N I S
18. What essentials are missing from our representations of pain?
U N D E R S TA N D I N G PA I N
101 2 3 4 5 6 7 8 90
Visual Analogue Scale (Wong-Baker)
19. How can we be comprehensive and also comprehensible?
U N D E R S TA N D I N G PA I N
406 words
22 questions
220 possibilities
150 words
20 sections
78 questions
McGill Pain Questionnaire
20. 101 2 3 4 5 6 7 8 90
McGill Pain Index McGill Pain Questionnaire Visual Analogue Scale
Visual Communication
Context
Intensity
Characteristic of pains
Non-English Friendly
Visual Communication
Context
Intensity
Characteristic of pains
Non-English Friendly
Visual Communication
Context
Intensity
Characteristic of pains
Non-English Friendly
50
40
30
20
CRPS
Amputation Finger/Toe
After Shingles Nerve Pain
Arthritis
Childbirth
c Back Pain
50
40
30
20
CRPS
Amputation Finger/Toe
After Shingles Nerve Pain
Arthritis
Childbirth
Chronic Back Pain
50
40
30
20
CRPS
Amputation Finger/Toe
After Shingles Nerve Pain
Arthritis
Childbirth
Chronic Back Pain
Pain assessment tools are challenging for non-English speakers.
U N D E R S TA N D I N G PA I N
21. Body parts labeled in French, Spanish, Vietnamese and Korean, respectively
L A B I O SG O R G E P H Ổ I 발목
VERBAL-VISUAL COMMUNICATION
Visual communication may offer language-independent options.
F R O M V E R B A L T O V I S U A L
French Spanish Vietnamese Korean
22. — James Campbell
“If pain were assessed with
the same zeal as other vital signs are,
it would have a much better chance
of being treated properly.”
24. Language barrier hinders LEP patients to describe specific
characteristics of pain.
D I S C O V E R I N G T H E P R O B L E M
25. Patients need to read and understand many documents
to navigate the complex healthcare system.
D I S C O V E R I N G T H E P R O B L E M
• New Patient form
• Medical history form
• HIPAA form
• Patient Pain and Fatigue Self
Assessment form
• Prescription History
• Consent form
All in
English!
26. Doctors and patients sometimes use different words to describe
similar pain.
INFORMATION ARCHITECTURE
Melzack, R., & Torgerson, W. S. (1971). On the Language of Pain. Anesthesiology, 34(1), 50-59.
27. I developed a visual system to communicate pain type and intensity.
I N F O R M AT I O N A R C H I T E C T U R E
SENSORY
TEMPORAL SPATIAL PUNCTATE
PRESSURE
DULLNESS SENSORY
MUSCULAR
SENSORY
NEURAL
AFFECTIVE-
EVALUATIVE
INCISIVE
PRESSURE
CONSTRICTIVE
PRESSURE
TRACTION
PRESSURE
THERMAL BRIGHTNESS
Quivering
Pulsing
AFFECTIVE
LESSMOREINTENSITY
33. Problems understanding a medical situation by
English proficiency and physician language
(Wilson, et al., 2005).
Limited English Proficient
English Proficient
Language Concordant Language Discordant
22% 20%44% 57%
36. Freq.Avg Pos. Freq.Avg Pos.
4 U N I Q U E C AT E G O R I E S
Image sorting revealed unexpected synonymous pain.
37. Freq.Avg Pos. Freq.Avg Pos. Freq.Avg Pos.
1 0 U N I Q U E C AT E G O R I E S
Pain is distinctive yet similar.
38. BURNING PINS AND NEEDLES PRICKLING DULL
NAUSEATING CONSTANT COMES AND GOES CRUSHING
Many workshop participants used common visual
metaphors to describe their own pain.
R E S E A R C H I N S I G H T S
BURNING PINS AND NEEDLES PRICKLING DULL
NAUSEATING CONSTANT COMES AND GOES CRUSHING
52. 갑자기 어깨가 콕콕 쑤시 듯 아파요.
Where is your pain?
What is your pain feel like?
How bad is your pain?
머리가 깨질듯이 아파요.
잠을 못잘 정도로 아파요.
LEP Patients
V I S U A L PA I N C O M M U N I C AT I O N
53. 갑자기 어깨가 콕콕 쑤시 듯 아파요.
Where is your pain?
What is your pain feel like?
How bad is your pain?
머리가 깨질듯이 아파요.
잠을 못잘 정도로 아파요.
LEP Patients
Anyone with Pain
V I S U A L PA I N C O M M U N I C AT I O N
59. Sources
Levy, N., Sturgess, J., & Mills, P. (2018). “Pain as the fifth vital sign” and dependence on the “numerical pain scale” is being
abandoned in the US: Why?.
Melzack, R., & Torgerson, W. S. (1971). On the Language of Pain. Anesthesiology, 34(1), 50-59.
Melzack, R. (1975). The McGill Pain Questionnaire: Major Properties and Scoring Methods. Pain, 1(3), 277-299.
Møller, A. R. (2014). Pain: its anatomy, physiology and treatment. Dallas, Tex, USA: Aage R. Møller Publishing.
The Design Process: What is the Double Diamond? (2005). Retrieved March 26, 2018, from https://
www.designcouncil.org.uk/news-opinion/design-process-what-double-diamond
U.S. Census Bureau (2016). Language spoken at home, 2016 American Community Survey 1-Year Estimates. Retrieved from
https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_16_1YR_S1601&prodType=table
Microsoft Inclusive Design Toolkit: http://download.microsoft.com/download/B/0/D/B0D4BF87-09CE-4417-8F28-
D60703D672ED/INCLUSIVE_TOOLKIT_MANUAL_FINAL.pdf