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
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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
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.