The Use of Language in Diabetes Care and Education Melinda D. Maryniuk, RD, MEd, CDE

Saturday, February 10, 2018 10:30 a.m. – 11:15 a.m.

The language that we use as healthcare professionals in our conversations with patients can have a profound impact in both positive and negative ways. Many words that are commonly part of the diabetes vocabulary are associated with feelings of judgment, fear, blame, guilt and shame. Some words inappropriately label people with diabetes and perpetuate misunderstandings.

Research drawn from other fields indicates that language does have an impact on the patient-provider relationship and may likely affect diabetes self-care behaviors and ultimately blood glucose levels and other clinical outcomes. For example, lessons learned from expectancy theory research indicates that when students are labeled in a certain way, they are more likely to perform to match that label.

The American Diabetes Association and the American Association of Diabetes Educators convened a Task Force to look more deeply at the literature and identify recommendations regarding the use of language in diabetes care and education. A paper was prepared and jointly published in December 2017 that presents five recommendations:

1. Use language that is neutral, non-judgmental and based on facts, action or physiology/biology.2. Use language that is free from stigma3. Use language that is strengths-based, respectful, inclusive and imparts hope.4. Use language that fosters collaboration between patients and providers.5. Use language that is person-centered.

The paper also presents a table of words with potentially negative connotations and suggests replacement language along with the rationale for doing so. While the paper was published with the healthcare professional audience in mind, the goal is to get the message out to a much wider audience including pharmaceutical industry professionals, the media and people affected by diabetes.

The audience is encouraged to identify specific steps to both identify problematic words/phrases in their own language (spoken and written) and discuss steps towards making revisions that are more in line with the recommendations.

References

Dickinson J, Guzman SJ, Maryniuk MD, O’Brian CA, Kadohiro JK, Jackson RA, D’Hondt N, Montgomery B, Close KL, Funnell MM. The use of language in diabetes care and education. Diabetes Care. 2017 Dec; 40(12): 1790-1799 and Diabetes Educ 2017 Dec; 43 (6) 551-564.

Dickinson J, Maryniuk M. Building Therapeutic Relationships: Choosing Words That Put People First. Clinical Diabetes. 2017 Jan; 35(1)51-54.

Speight J, Conn J, Dunning T, Skinner TC, Diabetes Australia. Diabetes Australia position statement. A new language for diabetes: improving communications with and about people with diabetes. Diabetes Res Clin Pract 2012 Sep; 97(3): 425-31.

Resources from AADE: • Quick Guide for Healthcare Professionals: Speaking the Language of Diabetes• Media Guide for Journalists: The Power of Language in Reporting on Diabetes

https://www.diabeteseducator.org/docs/default-source/practice/educator-tools/diabetes-language-media-guide.pdf?sfvrsn=0

WORDS MATTER: THE USE OF LANGUAGE IN DIABETES

CARE AND EDUCATION

A Discussion About Making a Difference

Melinda D. Maryniuk MEd, RDN, CDE

Senior Consultant; Maryniuk & Associates

Diabetes Education & Nutrition Consultants

Boston, MA

Presenter Disclosure Information

In compliance with the accrediting board policies, the

American Diabetes Association requires the following

disclosure to the participants:

Melinda Maryniuk

Research Support: none

Employee: self-employed

Board Member/Advisory Panel: Foodicine Health

Stock/Shareholder: none

Consultant: Diabetes – What to Know

Other:

Objectives

• Identify words that may be “problematic” as

we talk about diabetes

• Discuss the 5 recommendations from the

ADA/AADE Paper on Language

• Practice turning “problematic” words and

phrases into ones that are “preferred”

• Explore some “next steps”

Dietitian / Nutritionist

Diabetes Education

Patient? Client? Customer? Diet? Meal Plan?

Program? Service?

www.slido.com Code: B799

Share some words or phrases that you

find problematic

Research:

Does Language Affect people? Meet Susan Guzman, PhD

Director of Clinical/ Education Services – Behavioral Diabetes Institute

www.behavioraldiabetes.org

Expectancy Theory

Rosenthal & Fode, 1963; Expectancy Effects

Expectancy Effects: 4 Main Factors

• The emotional climate was affected by expectations. Teachers were warmer toward students they expected to do well.

• The behaviors of teachers were different. Teachers gave “spurters” more difficult study materials.

• The opportunities to speak out in class were different. Teachers gave “spurters” more opportunities to respond and more time to answer questions.

• The level of detailed feedback about performance was different. Teachers gave “spurters” more informative feedback.

(Rosenthal, 1994)

Uncontrolled Diabetes Stigma

People with diabetes perceived as…

• Having a character flaw or a failure of personal responsibility.

• Being a burden on the healthcare system

• Being weak, fat, lazy/slothful, overeaters/gluttons, poor, bad, and not intelligent

Liu et al, 2017; Tak-Ying et al, 2003; Browne et al, 2013; Browne et al, 2014; Vishwanath, 2014

Does diabetes come with social stigma?

No24%

Yes76%

Type 1

Liu et al, Clinical Diabetes. Winter 2017

No48%

Yes52%

Type 2

Guilt, shame, blamed, fear

embarrassment

• Avoidance/Hiding

• Additional Barriers

• Disengagement

• Isolation

• Depression

• Health Outcomes

Ritholz. Chronic Illn 2014

Weinger Arch Int Med 2011

www.slido.com Code: B799

On a scale of 1-5, how strongly do you feel our words

can impact patient’s emotions, attitudes, behaviors

and ultimately – outcomes? (5 = very strong)

HCP communications

Messages at diagnosis

IntroDia: Conversation Elements

• 13 'Helped to make a treatment

plan that I could do in my daily life'

14 'Helped to plan ahead so I

could take care of my

diabetes even in hard times'

30 'Told me that if someday I

need to take insulin, it would be

my own fault.'

27 'Told me that diabetes

is mostly my fault,

because of the way I had

been living my life.'

36 'Told me that with good care

and effort, odds are good that I can

live a long and healthy life with

diabetes'

22 'Told me that a lot can be done to

control my diabetes'

17 'Encouraged me to attend diabetes-

related programs in the community that

could help me'

10 'Encouraged me to go to a specific

group or class to help me cope with

diabetes.'

(Polonsky et al, 2017)

Conversation elements

Quality ofpatient–physician communication at

diagnosis

Positive(β = +1.093)

Positive(β = +0.880)

Positive(β = +0.702)

Positive(β = +0.910)

Factor 1

Encouraging

Factor 2

Collaborative

Factor 3

Discouraging

Factor 4

Recommending Other Resources

How distressed by the regimen are they with their diabetes?

Regimen-related DDS

How well do they feel?WHO-5

Do they follow a healthy diet?SDSCA General Diet Score

Do they eat healthier foods?SDSCA Specific Diet Score

To what extent do they take their medication?

SDSCA Medication Score

Do they exercise frequently?SDSCA Exercise Score

How emotionally distressed are they with their diabetes?

Emotional DDS

Positive(β = +0.391)

Positive(β = +0.436)

Positive(β = +1.690)

No Impact(β = 0.093)

Negative(β = -1.242)

Positive(β = -0.412)

Positive(β = -0.367)

Polonsky et al, 2017

Key Messages

• Language conveys meaning that can determine

expectations. Expectations can lead to bias that affects

outcomes (even if we aren’t aware of it).

• Messages that convey stigma, judgment, fear, and

misunderstanding can lead to disengagement,

avoidance and distress

• HCPs have an important role in defining this experience

by communicating collaborative and encouraging

messages

Meet Jane Dickinson Qualitative Research on Language

• Purpose: To identify common words that have a negative

impact on people living with diabetes

• Focus groups - Adults

• 2 online, 2 live focus groups = 68 participants

• Questions included:

• What diabetes-related words have a negative impact on you?

• How do you feel when you hear those words?

• If you could ask your HCP to stop using one word – what would it be?

• How do you think not using those words would affect your diabetes

experience?

Dickinson, Diabetes Spectrum. Online Oct 2017

6 Themes Emerged in Analysis

• Judgment• non-compliant, uncontrolled, don’t care, should, failure

• Fear/Anxiety• complications, blindness, death, DKA

• Labels/Assumptions• diabetic, brittle, all people with diabetes are fat, suffer

• Oversimplifications/Directives • just, should, lose weight, you’ll get used to it, at least it’s

not…

• Misunderstanding/Misinformation/Disconnected• cure, reverse, bad kind, you’re fine

• Body Language and Tone • no eye contact, accusatory tone

Dickinson, Diabetes Spectrum. Online Oct 2017

Hurtful words – heard everywhere

General Public

Unless someone is talking

about how awesome I am in

dealing with diabetes –

what is said usually feels

bad.

Healthcare Providers

I hate seeing “uncontrolled”

on the health record. I’ve

always felt like I’m the only

one who can judge my own

feelings of control.

Media

Hey, you know what I saw

on the news about

diabetes? – INSTA-

CRINGE.

3 Themes – Please…

Stop Judging

Anything that begins with

‘should’ .

Stop labeling

Labeling of any kind sucks

big time.

Stop discussing

complications

…not at every visit. I heard

it the first time.

Suggestions for HCPs

• Acknowledge diabetes is hard

• Focus on the person, not the diagnosis

• Avoid judgement, labels

• It’s less about the word – than the meaning behind it

• It’s not about just replacing one word (compliance) with another

(adherence)

• Adopt a more person-centered, strength-based approach

So…. What to Do???? Look around….

https://www.diabetesaustralia.com.au/position-statements

http://jaime-dulceguerrero.com/wp-content/uploads/2015/03/IDF-LANGPHI-

2.pdf

One small step….

Dickinson & Maryniuk. Building therapeutic relationships: Using

words that put people first. (2017) Clinical Diabetes, 35(1), 51-54.

A much bigger step!

Committee

• Jane K. Dickinson, RN, PhD, CDE(chair)

• Susan J. Guzman, PhD

• Melinda D. Maryniuk, RD, MEd, CDE

• Catherine A. O’Brian, PhD

• Jane K. Kadohiro, DrPH, APRN, CDE, FAADE

• Richard A. Jackson, MD

• Nancy D’Hondt, RPh, CDE, FAADE

• Brenda Montgomery, RN, MSHS, CDE

• Kelly L. Close, BA, MBA

• Martha M. Funnell, MS, RN, CDE

Guiding principles

• Diabetes is a complex and challenging disease

involving many factors and variables

• Stigma that has historically been attached to a

diagnosis of diabetes can contribute to stress and

feelings of shame and judgment

• Every member of the healthcare team can serve

people with diabetes more effectively through a

respectful, inclusive, and person-centered approach

• Person-first, strengths-based, empowering language

can improve communication and enhance

motivation, health and well-being of people with

diabetes.

Becoming aware of and

changing our words

Problematic Preferred

Diabetic Person living with diabetes

Test (blood glucose) Check / monitor

Control (verb) Manage; describe what the

person is doing

Control (noun) Define what you mean by control

and use that instead (blood

glucose level, A1C)

Good/Bad/Poor Safe/unsafe levels; target levels;

use numbers and focus on facts

instead of judgmental terms

Compliant / Adherent Takes medicine about half the

time; Eats vegetables a few times

a week; engagement;

participation

• Recommendation #1• Use language that is neutral, non-judgmental and

based on facts, action or physiology/biology.

Your diabetes is not in good

control. It seems that your

efforts with meal planning,

exercise and metformin have

failed, so it’s time to add

another medication.

Instead of this…. Say this….

Your recent A1C level is

8.5. That is above the

target goal of 7.0 we

discussed. I’m thinking that

adding another medicine

that works in a different way

could help. How does that

sound?

• Recommendation #2• Use language that is free from stigma.

While I’m willing to refer this

patient to you (an RDN), I

doubt it will do any good, as

she has been obese for a

long time, and is unmotivated

and in denial. She has not

done anything I’ve

suggested.

Instead of this…. Say this….

I’m referring a new patient

to you. She has a BMI of 35

and while I’ve suggested

she cut back on high calorie

foods, it has not resulted in

weight loss. Let me know

what you learn and what

you’d recommend.

• Recommendation #3• Use language that is strengths-based, respectful,

inclusive and imparts hope.

Mrs Lee, I see that you’ve

been non-compliant with BG

testing as you’re not doing it

before every meal as we

discussed. You really should

be doing this.

Instead of this…. Say this….

Mrs Lee, I see you’ve been

successfully checking

fasting BG 2-3 times this

past week. Great work.

What might make it easier

for you to also check a few

more times?

• Recommendation #4• Use language that fosters collaboration between

patients and providers.

Mr. Smith, I see that you

didn’t fill your

prescriptions. Here is

another Rx. You should

get this filled as soon as

possible and take the

medicine.

Instead of this…. Say this….

Mr. Smith, I see that

your last A1C result is

9.2% Do you have

concerns you’d like to

discuss… perhaps

about any challenges

you face taking

medicines?

• Recommendation #5• Use language that is person-centered.

Diabetics who suffer

from hypertension

should follow a DASH

diet.

Instead of this…. Say this….

People with diabetes

who also have

hypertension may

benefit from learning

about the DASH

approach to meal

planning.

Further study is needed!

• What is the role of expectancy theory in diabetes?

• What is the impact of language in the media on people

with diabetes?

• What is the effect of language on patient

engagement/motivation and outcomes?

• What are effective ways to teach HCPs about language?

Standards of

Medical Care in

Diabetes - 2018

Section 3: Comprehensive Medical Evaluation and

Assessment: Patient-Centered Collaborative Care

• A patient-centered communication style that

uses person-centered and strength-based

language, active listening, elicits patient

preferences and beliefs, and assesses literacy,

numeracy, and potential barriers to care should

be used to optimize patient health outcomes

and health-related quality of life. B

Comprehensive Medical Evaluation and Assessment of Comorbidities:

Standards of Medical Care in Diabetes - 2018. Diabetes Care 2018; 41 (Suppl. 1): S28-S37

What can you do?

• Take a closer look at publications• Discuss/share with colleagues

• Think about your own language: spoken and written• Do a self-assessment (audio tape? Feedback from colleagues?)

• Review PPTs / teaching resources

• Review diabetes education tools

• Create a work group – Quality improvement• Create a “style guide” for writing

• Share with all new employees

• Discuss in student training programs

• Get feedback from patients

• Talk with media/communications department

• Other:

From AADE…..

www.diabeteseducator.org

www.slido.com Code: B799

Based on this presentation, which of the following

actions will you consider taking?

• Communications is less about speaking than it is

about listening and observing.• Barbara Anderson, PhD Former Joslin Psychologist

Discussion

Questions/Comments: Melinda@MelindaMaryniuk.com

Real Life Examples

• What % of what you say to others is likely to be

partially missed or misunderstood? ____%

• How much of what people listen to, in face-to-face

communications is based on your:

• words alone____%

-tone of voice ____%

-body language ____%

How long does it take before the average listener

tunes out your message?

80-90

7

35

58

9 seconds

If HCPs stopped using these words…

• I would feel respected or listened to, that the HCPs really

care.

• “I would have more faith in my health care providers if

they didn’t use words that I think convey a lack of

information, sensitivity or understanding of my

experience.”