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Resilience and Protection:
Achieving Good Outcomes

in Pediatric Diabetes
Marisa E Hilliard PhD
Pediatrics
International Society of Pediatric and Adolescent Diabetes
September, 2014
Objectives
Challenges and Risks
Resilience and Protection
Diabetes Resilience Model
Research and Clinical Applications
ISPAD 2014 Resilience Hilliard
Diabetes is Tough.
Management is demanding.
Complex, unrelenting, expensive.

Behavior is foundation of diabetes care, yet is not
the only influence on BG.
Patients/parents often feel out of control of BG, yet
hold themselves 100% responsible.
Arguments about diabetes are exhausting.
Worries and fears can be all-consuming.
The demands take a toll.

Worries for
the future
Feeling
overwhelmed
Fears about
complications
Distress
Frustrated,
feel out of
control
Dealing with
caring yet
intrusive people
Burnout
Burden
Exhausted
Im tired of diabetes. A RANT

Im tired of diabetes today.
Im tired of fear. Im tired of being tired ALL the time. Im tired of alarms and
numbers and blood and measurements and needles and the smell of insulin.
Im sick of stupid needles and the never ending holes in my sweet little girl. Im
tired of fighting endlessly against a force that can never truly be
controlled.
Im tired of budgeting every spare dollar for medicine and supplies and
pumps
Im tired of diabetes and Im ready for that elusive cure. Too bad its not
really that close. I will never give up hope but Im not holding my breath
So we will rely on insulin and needles and gadgets and alarms and fear.
Diabetes is here to stay, and while we can live with that it doesnt mean we
always have to like it. Today I dont. Today Im sick and tired of diabetes.
WayTooSweet.blogspot.com - excerpt reproduced with permission of author
Risk happens.
Psychological
& Behavioral
Risks:
- Depression
- Anxiety
- Disordered
eating
Anderson et al., 2011 (review)
Family Risks:
- Conflict
- Uninvolved
- Over-involved
- Miscarried
helping
Environment &
Systems
Disparities:
- Poverty/SES
- Race
- Access
Source: NY Times Economix Blogs 2010, based on US Census Bureau, American

Community Survey, 2009, and Puerto Rico Community Survey, 2009
14
12
10
8
6
4
2
0
Depressive
Symptoms
Diabetes
Distress
Socioeconomic
Disadvantage
Diabetes
Conflict
6
Baseline 6-9 mos. 12-15
mos.
18-24
mos.
Meeting Treatment Targets

40%
20%
Normatively Similar
High Risk
Hilliard et al., 2013
BGM Frequency
A1c %
Suboptimal trajectories are common.
5
4
3
2
1
0
mos.
18-24
mos.
Resilience Happens, Too.
A (traditional) definition
Merriam Webster says
Resilience as an outcome.
What happens when people overcome
extremely stressful or difficult situations*
and do better than expected.
* the kinds of situations that would be expected to throw everything
off-track, like exposure to war, trauma, or major disease
Luthar, 1993; Masten, 2001
Resilience is the most common outcome!
Bonanno et al. (2013) Journal of Child Psychology and Psychiatry; 54: 378-401. Reproduced with permission
from John Wiley & Sons (publisher).
Assets for resilient outcomes.
Individual:
- Cognitive Skills, IQ
- Self-Efficacy
- Optimism, Positive
Outlook
- Sense of Humor
- Talents
- Faith/Meaning
Masten, 2001
Family &
Relationships:
- Close relationship with
caring adults
- Predictable home
environment
- Supportive family
interactions
- Prosocial peer group
Environment &
Community:
- Good schools
- Public safety
- Health care access
- Financial resources
Protective skills + behaviors.
Intrapersonal
Interpersonal
Problem-Solving Skills
Eliciting Support from

Others
Coping Skills
Self-Regulation Skills
Expressing Gratitude
Masten, 2004; Luthar et al., 2006; Rutter, 2012
Participating in
Prosocial Activities
Positive Parenting
Practices
Why diabetes resilience?
Risks for poor outcomes are well researched

Less known about how and why people do well
despite challenges
May inform the care we provide to at-risk youth
and families
Foster individual and family strengths that
promote good diabetes management and control
14
12
10
8
6
4
2
0
3 subgroups of diabetes
management and control
Little change over 2 years
6
mos.
40%
18-24
mos.
Meeting Treatment Targets

Normatively Similar
High Risk
Hilliard
et et
al., al.,
20132013
Hilliard
BGM Frequency
A1c %
Resilient diabetes trajectories are

common, too!
4
3
2
1
0
mos.
18-24
mos.

Diabetes Management
Good QOL
Protective
Skills &
Behaviors
Behavioral
Resilience
Outcomes
Social/Context
Family
Individual
Health
Resilience
Outcomes
Risks and
Assets

In-range A1c
No complications
In context of general developmental tasks (social, academic)
Diabetes assets + protective behaviors.
Positive Outlook,
Self-Efficacy
Effective
Communication,
Parental Support
Good Relationship
with Doctors and
Nurses
Use ProblemSolving and

Coping Skills
Parents Actively
Monitor Diabetes
Management
Actively
Participate in
Medical Visits
Danicas Optimistic Outlook
www.youtube.com/user/DiabeticDanica- video reproduced with permission of author
Resilience in Action
Adversity
Overwhelming
diabetes
management
demands
Diabetes
burnout,
distress
Feel isolated
Asset
Optimistic
outlook
Diabetes
online
community
Tech savvy
Years of
experience
Protective
Skill
Resilient
Outcome
Cognitive
restructuring
Seeking
support
Repeat what
works, like
exercise
Have fun
sharing
experiences
Good mood
Hopefulness
Better
management
and glycemic
control
Intervention target Goal

is to build skills that
promote resilient outcomes
Resilience Research and Care.
Measuring resilience.
Diabetes Resilience Measure for Youth (DRM-Y)

12 items
Diabetes-Specific Mastery & Relatedness
I am good at figuring
out what to do for my
diabetes care when
problems come up.
I can count on my friends

to help me take care of
diabetes if I need help.
If I try hard to do
everything I need to do
for my diabetes, it
makes a difference.
I talk to my parent(s)
calmly about diabetes,
like talking about my
A1C or remembering to
do blood sugar checks
Adolescent version (14-18)
N=241 teens + parent, enrolled in resiliencepromotion RCT baseline data only.

Demographic & Clinical Characteristics
Percent (n)
Age, years
15.8 1.2
Gender, % female
60% (145)
Caregiver, % mother
89% (215)
Annual family income, %$100K
49% (111)
Diabetes duration, years

Insulin administration, % pump
Mean SD
7.2 4.1
69% (167)
A1c, %
9.11.9
Blood glucose monitoring frequency
5.22.6
Hilliard et al., 2014; RCT: Weissberg-Benchell & Hood 5R01DK090030
Adolescent version validation.

Reliability
Internal consistency = 0.89

Item-total correlations = 0.54-0.78**
Construct
Validity
General resilience r = 0.84**
Discriminant
Validity
Hopelessness r = -0.33**
Family conflict r = -0.34**
Diabetes burden r = -0.57**
Criterion
Validity
Adherence r = 0.58**
BGM frequency r = 0.37**
A1c r = -0.36**
** p<0.001; Hilliard et al., 2014; RCT: Weissberg-Benchell & Hood
5R01DK090030
Coming soon
Additional validation studies currently underway.

Adapted versions for:
Children
(age 9-13)
Young adults (age 19-22)
Intervention and Resilience Promotion
Existing behavioral interventions emphasize health

promotion and prevention of poor diabetes outcomes
Intervention goal: promote protective skills + behaviors
Target multiple levels of influence
Practical, brief format (clinic-based? mHealth?)
Extend impact of existing interventions

Interventions promote positive outcomes.

Behavioral Family Systems Therapy-Diabetes
Effective communication skills
Coping Skills Training

Adaptive coping strategies
Family Teamwork
Cooperative problem-solving
Quality of Life Monitoring

Patient-provider communication about QOL
Wysocki et al., 2008; Anderson et al., 1999; Grey et al., 2000; De Wit et al., 2008
Strengths-based intervention.
Intervention pilot study.

Monitoring + Feedback design.
Diabetes care providers, in clinic.
Review what is going well in diabetes management:
Patient
and family diabetes strengths

Ratings from resilience and self-management surveys
Goal is to shift focus and tone of clinical encounters

toward reinforcing strengths.
A Humans Resilient, One Hundred Percent!

Sighed Panky, a lazy panc deep in the gut,
Im tired and Im bored
And Im stuck in a rut
From making, just making insulin every day.
Its work! How I hate it!
Id much rather play!
Id take a vacation, or a long nap
If I could find someone to do all this crap!
www.SixUntilMe.com - poem excerpts reproduced with permission of author (Kerri Sparling)
Then Panky thought, Could Kerri be up for the thrill?

Hello! called the lazy panc, smiling her best,
Youve nothing to do. Does this sound too strange
Would you like to do the work I do for a change?
Kerri laughed.
Why of all silly things?
I havent islets or enzymes or things.
ME do your job? Why that doesnt make sense!
Your job is to make insulin! The thought makes me
tense.

Tut, tut, answered Panky. I know youre not me
But I know you can do this. Wont you hear my plea?
Just pick up that needle and draw up the dose.
Once insulins flowing you wont feel morose.
I cant, said the Kerri.
PL-E-ASE!! begged her panc.
It wont be too hard, kid. Sorry to pull rank.
But Im leaving regardless if you raise your voice.
Youre a jerkface, said Kerri. Not to give me a

choice.
Im unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?
Youll figure it out, and the panc self-destructed.
The first thing to do, murmured Kerri,

Lets see.
The first thing to do is to prop up this Me
And to make ME much stronger. This has to be done
Because diabetes can weigh an emotional ton.
So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.
She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.

It sucks! Then it doesnt!
But Kerri remained sure,
My lifes worth this effort,
(Though Id still love a cure.)
I wish Pankyd come back
Cause some days Im so burnt.
I hope that my body thrives on the things that Ive
learnt.
Diabetes is constant, day after day.

But the life in its wake is still good, plenty yay.
And even on days when Stuff is Way Blah,
Life with disease is not life without Awe.
Its not always easy. Diabetes might test me.

But Ill stay on task and I wont let it best me.
I meant what I said
And I said what I meant
A humans resilient
One hundred percent!

Some days it is simple. Some months are real hard.
Diabetes is something you cant disregard.
But a panc on vacation doesnt mean that youre
broken.
You can still do this.
Truer words never spoken.
Thank you!
Barbara Anderson, Ph.D.

Korey Hood, Ph.D.
Jill Weissberg-Benchell, Ph.D.
Michael Harris, Ph.D.
National Institute of Diabetes and Digestive and
Kidney Disease, K12 DK097696-01 (PI: Anderson)
Sections of Pediatric Psychology and Diabetes &
Endocrinology at Baylor College of Medicine and
Texas Childrens Hospital
The Diabetes Online Community, for eloquently
sharing their experiences online and generously
allowing me to use their material.
Questions? Comments?
Be in touch: marisa.hilliard@bcm.edu
832-824-7209

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Resilience and Protection:

Achieving Good Outcomes

Marisa E Hilliard PhD

Challenges and Risks

Resilience and Protection

Diabetes Resilience Model

Research and Clinical Applications

ISPAD 2014 Resilience Hilliard

Complex, unrelenting, expensive.

Arguments about diabetes are exhausting.

Worries and fears can be all-consuming.

ISPAD 2014 Resilience Hilliard

The demands take a toll.

ISPAD 2014 Resilience Hilliard

Im tired of diabetes. A RANT

ISPAD 2014 Resilience Hilliard

Source: NY Times Economix Blogs 2010, based on US Census Bureau, American

Meeting Treatment Targets

Hilliard et al., 2013

Suboptimal trajectories are common.

ISPAD 2014 Resilience Hilliard

Resilience Happens, Too.

Merriam Webster says

ISPAD 2014 Resilience Hilliard

Luthar, 1993; Masten, 2001

ISPAD 2014 Resilience Hilliard

Resilience is the most common outcome!

ISPAD 2014 Resilience Hilliard

Assets for resilient outcomes.

ISPAD 2014 Resilience Hilliard

Protective skills + behaviors.

Eliciting Support from

ISPAD 2014 Resilience Hilliard

Diabetes Resilience Model

Why diabetes resilience?

Risks for poor outcomes are well researched

Meeting Treatment Targets

Resilient diabetes trajectories are

ISPAD 2014 Resilience Hilliard

Diabetes Resilience Model

Hilliard et al., 2012

ISPAD 2014 Resilience Hilliard

Diabetes assets + protective behaviors.

Use ProblemSolving and

ISPAD 2014 Resilience Hilliard

Danicas Optimistic Outlook

www.youtube.com/user/DiabeticDanica- video reproduced with permission of author

ISPAD 2014 Resilience Hilliard

Intervention target Goal

Resilience Research and Care.

Diabetes Resilience Measure for Youth (DRM-Y)

I can count on my friends

Adolescent version (14-18)

N=241 teens + parent, enrolled in resiliencepromotion RCT baseline data only.

Annual family income, %$100K

Diabetes duration, years

Blood glucose monitoring frequency

Hilliard et al., 2014; RCT: Weissberg-Benchell & Hood 5R01DK090030

ISPAD 2014 Resilience Hilliard

Adolescent version validation.

Internal consistency = 0.89

General resilience r = 0.84**