Katie Birnie, Psychology Resident, IWK Health Centre Dr. Elizabeth …diabetescare.nshealth.ca/sites/default/files/files/... · 2016-05-09 · Katie Birnie, Psychology Resident, IWK

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


Bennett-Johnson (1995)

Adherence

Health Care

Provider

Stress Biological Factors

Medical Regimen

Glycemic Control

Family and Peers

Child Adjustment

Disease Knowledge


Adherence

Health Care

Provider


Medical Regimen

Glycemic Control

Family and Peers

Child Adjustment

Disease Knowledge


Adherence

Health Care

Provider


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


Adherence

Health Care

Provider


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



A1C

Clinic visit

5

6

7

8

9

10

11

12

13



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



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



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


Adherence

Health Care

Provider


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


Role of Provider



seeker Leader


Provider Actions





Goal Information

sharing



change




Crisis



Role of Provider



seeker Leader


Provider Actions





Goal Information

sharing



change




Crisis


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)


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.

Documents

Katie Birnie, Psychology Resident, IWK Health Centre Dr. Elizabeth …diabetescare.nshealth.ca/sites/default/files/files/... · 2016-05-09 · Katie Birnie, Psychology Resident, IWK