Katie Birnie, Psychology Resident, IWK Health Centre
Dr. Elizabeth McLaughlin, Pediatric Health Psychology Service, IWK Health Centre
Karen O’Brien, Health Psychology Resident, QEII
Diabetes Care Program of Nova Scotia Spring Conference - April 22, 2016
With acknowledgments to Dr. Michael Vallis and the Behaviour Change Institute
By the end of the session, participants will:
1. Be able to describe the concept of diabetes distress
2. Identify contributors to and consequences of distress in children, adolescents, adults, and family members, including how distress relates to treatment adherence
3. Feel better prepared to assess and address distress within their scope of practice so as to support disease management and quality of life
“If diabetes were a weight that you carried around in a knapsack on your back, how heavy would it be”:
A 1 lb loaf of bread?
A 5 lb sack of potatoes?
A 50 lb iron anvil?
A 2 ton truck?
T1 T2 Non-Med T2 Non-Insulin Med
T2 Insulin Med
Canada
T1 T2 Non-Med T2 Non-Insulin Med
T2 Insulin Med
Global
48%
31% 26%
17%
53% 48%
38% 34%
% of adults with diabetes with high diabetes distress (scores of 40–100 on Problem Areas in Diabetes Scale)
Niccoluci et al. Diabetic Medicine. 2013;30:767-777
% of adults with diabetes rating impact on at least one aspect of life as slightly to very negative
83%
17%
Rated at least one aspect of life slightly to very negative
Did not rate any aspect of life slightly to very negative
72%
28%
Type 1 (A)
Type 2 (B)
Aspects of life rated • Physical health • Emotional well-being • Financial situation • Leisure activities •Work or studies •Relationship with friends, family, peers
Niccoluci et al. Diabetic Medicine. 2013;30:767-777
Bennett-Johnson (1995)
Adherence
Health Care
Provider
Stress Biological Factors
Medical Regimen
Glycemic Control
Family and Peers
Child Adjustment
Disease Knowledge
Bennett-Johnson (1995)
Adherence
Health Care
Provider
Stress Biological Factors
Medical Regimen
Glycemic Control
Family and Peers
Child Adjustment
Disease Knowledge
Bennett-Johnson (1995)
Adherence
Health Care
Provider
Stress Biological Factors
Medical Regimen
Glycemic Control
Family and Peers
Child Adjustment
Disease Knowledge
The behavioural demands of self-care can be OVERWHELMING ◦ Self-testing, healthy eating, exercise/activity,
insulin/medication regimen, general health care
Maintaining glucose control is enormously COMPLEX
Diabetes self-care demands are CONSTANT ◦ No weekends, summer vacations, retirement packages
Diabetes can be UNFORGIVING
Diabetes is plagued by UNCERTAINTY
Emotional
Interpersonal
Treatment Regimen
Kids
• Needles • Peers /
questions from others
Siblings
• Worry re: sibling and self • Relationship with
parents
Adolescents
• Autonomy/self-management • Identity / self-esteem • Perceived judgment • Body image/weight control • Needles
Parents
• Nighttime • Away from parent (e.g., school) • “More” parenting
Adults
• Time and energy required
• Other immediate responsibilities (e.g., work, kids)
Supportive involvement of
others (e.g., parents)
Family communication
Family problem-solving
Decreased family conflict
Diabetes management heavily influenced by
family function
Child Factors
Parent Factors
Parent-child Relationship Factors
Diagnosis
Adolescence
Transitions
Diagnosis
Adolescence
Transitions
• Increased disease self-management • “Typical adolescence”
(e.g., peers, parent-child conflict, autonomy, increased risk taking)
• Puberty / biological changes
• Change in care providers • Less family involvement
• Having a chronic illness • Medical regimen
Diagnosis
Adolescence
Transitions
Appointments
Appointments Appointments
Appointments
Appointments
Appointments
Bennett-Johnson (1995)
Adherence
Health Care
Provider
Stress Biological Factors
Medical Regimen
Glycemic Control
Family and Peers
Child Adjustment
Disease Knowledge
Youth and caregiver(s) (and often more…) ◦ Goal:
Rapport with both/all
Avoid aligning too far with one
Youth’s
Caregiver(s)’ ◦ Note: Agenda for self or for child?
Reflecting upon differences can be powerful ◦ Your priority right now is x, whereas your priority
right now is y. No wonder you are arguing about this all the time.
Short term goal: Increase health
Longer term: Increase child’s self-management
5
6
7
8
9
10
11
12
13
Time 1 Time 2 Time 3 Time 4
16 yr old girl, T1DM, A1C over time
A1C
5
6
7
8
9
10
11
12
13
Time 1 Time 2 Time 3 Time 4
16 yr old girl, T1DM, A1C over time
A1C
Clinic visit
5
6
7
8
9
10
11
12
13
Time 1 Time 2 Time 3 Time 4
16 yr old girl, T1DM, A1C over time
A1C
Clinic visit
Your A1C is very concerning! You really need to get that down! (or else!)
5
6
7
8
9
10
11
12
13
Time 1 Time 2 Time 3 Time 4
16 yr old girl, T1DM, A1C over time
A1C
Clinic visit
Wow, you have really made a lot of progress! Keep up the great work!
5
6
7
8
9
10
11
12
13
Time 1 Time 2 Time 3 Time 4
16 yr old girl, T1DM, A1C over time
A1C
Clinic visit
Wow, you have really made a lot of progress! Keep up the great work! Have you thought about your next steps?
Human nature to be more influenced by short term consequences
Children and adolescents even more driven by short term
Goal: Make it meaningful today ◦ Extrinsic motivation
◦ Intrinsic motivation
◦ Link current behaviour to broader goals and values
Bennett-Johnson (1995)
Adherence
Health Care
Provider
Stress Biological Factors
Medical Regimen
Glycemic Control
Family and Peers
Child Adjustment
Disease Knowledge
Directive Supportive Motivational
Role of Provider
Expert Follower Collaborator with expertise to share
Role of Patient Uninformed help
seeker Leader
Collaborator with decision capacity
Provider Actions
Prescribe, educate, explain
Listen without direction, Follow, Let be
Listen with empathy and
direction, Inform with choices
Goal Information
sharing
Allowing emotional expression
Creating/ Strengthening motivation to
change
Indications Emergency Diagnosis
New condition No ambivalence
Emotional experience
Crisis
Presence of ambivalence
Directive Supportive Motivational
Role of Provider
Expert Follower Collaborator with expertise to share
Role of Patient Uninformed help
seeker Leader
Collaborator with decision capacity
Provider Actions
Prescribe, educate, explain
Listen without direction, Follow, Let be
Listen with empathy and
direction, Inform with choices
Goal Information
sharing
Allowing emotional expression
Creating/ Strengthening motivation to
change
Indications Emergency Diagnosis
New condition No ambivalence
Emotional experience
Crisis
Presence of ambivalence
Directive Supportive Motivational
Role of Provider
Expert Follower Collaborator with expertise to share
Role of Patient Uninformed help
seeker Leader
Collaborator with decision capacity
Provider Actions
Prescribe, educate, explain
Listen without direction, Follow, Let be
Listen with empathy and
direction, Inform with choices
Goal Information
sharing
Allowing emotional expression
Creating/ Strengthening motivation to
change
Indications Emergency Diagnosis
New condition No ambivalence
Emotional experience
Crisis
Presence of ambivalence
25
19%
26%
32% 31% 29%
20% 16%
52%
73% 76%
72% 67%
44% 40%
0%
25%
50%
75%
100%
Asked how
diabetes affects life
Asked about
problems with medications
Encouraged to
ask questions
Helped to
set goals
Helped to
make plans to achieve goals
Helped to
get support from others
Encouraged to go
to a group or class
People with diabetes (total) Health care professionals (total)
DAWN2 % of people with diabetes and health care professionals reporting their health care team/they engage in each behavior most of the time or always
N = 4,785
N = 8,596
• it’s getting in the way!
In general, what percentage of your patients follow your recommendations without much difficulty?
• Almost all
• Most
• About half
• Some but less than I’d like
• Few
Less than we’d like!
Provider: “I recommend that you start….”
Patient: “Well, I don’t think I could do that. You see….”
Context
Now what do you say?
“If diabetes were a weight that you carried around in a knapsack on your back, how heavy would it be”:
A 1 lb loaf of bread?
A 5 lb sack of potatoes?
A 50 lb iron anvil?
A 2 ton truck?
43 Vallis, M. 2015©
Understand the whole person and provide a safe place to “sit with” the reality of diabetes:
◦ Adjustment to illness
◦ Adaptation to self-management
◦ Support for social integration
Establish and support a change based relationship
Manage diabetes specific psychosocial issues ◦ Psychological Insulin Resistance
◦ Fear of Hypoglycemia
Understand the whole person and provide a safe place to “sit with” the reality of diabetes:
◦ Adjustment to illness
◦ Adaptation to self-management
◦ Support for social integration
Establish and support a change based relationship
Manage diabetes specific psychosocial issues ◦ Psychological Insulin Resistance
◦ Fear of Hypoglycemia
People with diabetes are very worried about the risk of
hypoglycemic events (% who mainly or fully agree)
People with diabetes are very worried about the risk of
hypoglycemia during the night (% who mainly or fully agree)
Niccoluci et al. Diabetic Medicine. 2013;30:767-777
Hypoglycemia fear scale
Rating of extent of worry about -
• Not recognizing I am having a reaction
• Not having food, fruit or juice with me
• Feeling dizzy or passing urine in public
• Having a reaction while asleep
• Embarrassing myself or my friends in a
social situation
• Having a reaction while alone
• Appearing drunk or stupid
• Losing control
• Having an insulin reaction
Scale validated by Cox et al. Diabetes Care 1987;10:617-621
fear
Hypoglycemia fear scale
• No one being around to help me during a reaction
• Having a reaction while driving
• Making a mistake or having an accident at work
• Getting a bad evaluation at work because of something
happening at work when my sugar is low
• Having seizures or convulsions
• Difficulty thinking clearly when responsible for others
(children, etc)
• Developing long-term complications from frequent low
blood sugar
• Feeling light-headed or faint
fear
Scale validated by Cox et al. Diabetes Care 1987;10:617-621
Reducing Fear of Hypoglycemia
• Ask patient what their ‘safe
zone’ is
o “what blood sugar range
do you feel comfortable
with right now”
• Once a plan is established
and patient is on board,
increased testing and
hypoglycemia
management are
recommended
o Patients often very
receptive as they
add to safety
• Do make recommendations about
lowering psychologically safe range to a
medically safe range
o Do this by shaping behaviour
o Negotiate with the patient and allow
empowerment
• Do not make
recommendations
based on ideal
Choice Negotiate choices to achieve different
outcomes
Predict If things stay the same, what is likely
to happen?
Describe How did you get to
where you are?
Most patients want
to hear what their
provider thinks, they
just don’t want to
lose control
Motivation often
increases when
people have the time
to realize no choice
is a choice
If it is not your job to
make people change
you can begin with
understanding
current behaviour
By the end of the session, participants will:
1. Be able to describe the concept of diabetes distress
2. Identify contributors to and consequences of distress in children, adolescents, adults, and family members, including how distress relates to treatment adherence
3. Feel better prepared to assess and address distress within their scope of practice so as to support disease management and quality of life
Is it ever challenging to parent a child with diabetes?
A new 3 session group for parents/caregivers of children and youth with Type 1 Diabetes is taking place at the IWK Health Centre in May/June 2016.
The group teaches psychological skills to handle the stress of parenting a child with diabetes in order to do what matters
most to you. The group is intended to support better diabetes management and your overall relationship with your child.
For more information, please contact Mary Lynn Lalonde at 902-470-8406 by April 28, 2016.