Family Teamwork and Type 1 diabetes
Barbara J. Anderson, Ph.D.
Professor of Pediatrics
Associate Head, Psychology Section
Baylor College of Medicine
Texas Children’s Hospital
Houston, TX
Objectives
1. Lessons from pediatric behavioral diabetes
research about family teamwork.
2. Challenges to family teamwork at different stages
of child development.
3. General tips for effective family teamwork at any
age.
4. Discussion/Questions
1. Lessons from Research:
What are the family factors that predict optimal
adherence & glycemic control?
1. Developmentally-appropriate parent involvement in
DM management tasks.
2. Lower levels of parent-child conflict about DM
management.
Parent Involvement in DM Management:
Research caused a “Paradigm Shift”
1) The “Old Message” (pre-1990): “The child with diabetes
must be independent in disease management.”
2) The “New Message” (post-l990): “The child with diabetes
must work inter-dependently with parents, and this
teamwork must change with development.”
Pre-1990’s Research with Children with
Diabetes
The old research that advised child/teen “independence” in
diabetes management:
 Studied only children with diabetes who had been referred for
psychiatric care due to multiple DKA hospitalizations
 The major problem was ‘over-involved’ mothers!
 Based on the prevailing pre-1990’s psychoanalytic theory–
Also, this was the “dinosaur age” of diabetes management,
prior to use of HbAlc, basal-bolus dosing, widespread use of
BGM, etc.
The ‘New Paradigm’ for Parent
Involvement
Since the 1990’s, developmental and behavioral
theories have prevailed, and this research
consistently finds that developmentally-appropriate
parent-child teamwork in managing diabetes
predicts optimal adherence & glycemic control
(blood sugar control).
(Allen et al, 1983; Marteau et al, 1987; Anderson et al, 1990; La Greca
et al, 1990; Weissberg-Benchell et al, l995; Wysocki et al 1996;
Anderson et al 1997; Anderson et al 1999; Laffel et al 2003; Anderson et
al 2009)
Evidence for Late-Childhood Behavior and
Glycemic Control ‘Tracking’ into Adolescence
From 3 longitudinal studies:
a. Joslin Diabetes Center, Boston, MA USA
(Jacobson et al 1987; Hauser et al 1990; Dumont
et al l995)
b. Royal Children’s Hospital Melbourne, Australia
(Northam et al 1996; Northam et al 2005)
c. . Children’s Hospital Pittsburgh, PA USA
(Kovacs et al 1996; Goldston et al 1995)
Behavior and Mental Health Problems

The interrelated behavior/mental health problems & poor
glycemic control during childhood track over time into
adolescence & young adulthood.

Child behavior problems at diagnosis are a risk factor for
later behavior and diabetes control problems & also have a
negative impact on parent-child interactions around DM
management.

High levels of family conflict are associated with behavior
problems & poor glycemic control.
Parent-Child Conflict around DM
In school-aged child, studies consistently
document that lower levels of diabetes conflict
are related to better adherence and glycemic
control.
(Waller et al 1986 ; Hauser et al 1990; MillerJohnson et al 1994 ;Viner et al 1996; Davis et al 2001;
Anderson et al 2002; Anderson 2004).
Family Communication and DM-specific Conflict
How parent feels and thinks about BG…
- “I’m scared when I see a blood sugar of 400. - What does a
blood sugar of 400 mean for my child?”
- “Why can’t s/he have stable blood glucose levels?
- “Why is her DM getting worse?”
Impacts: How parent talks to child (with words or facial
expressions) about BG…
- “That blood sugar is so bad! What did you eat?”
Avoid Shame and Blame Around BG
Dad’s really mad
at me! He’d be
happier if my
blood sugar were
120 or if I didn’t
check at all!
Dad, my
blood sugar is
385.
385?! Why is it
so bad? What
did you eat?
That scares
me! It could
cause
complications!
1) OCCASIONAL HIGH BLOOD SUGARS DON’T LEAD TO COMPLICATIONS. It is normal for growing
children to have out-of-range blood sugars. An occasional blood sugar of 300 or even 400 or more
will not cause complications.
2) THERE IS NO SUCH THING AS A “BAD” BLOOD SUGAR. Any result from blood sugar monitoring
is good because it gives helpful and important information that lets you make the best choices in
insulin, activity, and food.
2. Normal Developmental Tasks of
Childhood/Adolescence
Challenges to
family teamwork at
different stages of
child development:
infancy –adolescence.
Normal Developmental Tasks
 Sequence of milestones in physical, cognitive,
psychological, and social areas that child achieves
before moving on to the next stage of maturation.
 Helps parents have realistic expectations for
developing child.
INFANCY (0-1 yr.)
Normal Developmental Tasks:
Physical Growth
Develop trusting attachment or bond with
caregiver(s)
Challenges for parent when child has DM:
Very stressful period; Intense grief, few
supports.
Vigilance around hypoglycemia, especially at
night. Continuous BGM may be useful.
TODDLER (1-3 yrs.)
Normal Developmental Tasks:
Physical Growth; Brain Development
Mastery of Physical World
Sense of Autonomy, Independence, Separate
“Self”
Challenges for parent when child has DM
Unpredictable eating and activity patterns. Pumps
may be useful.
Shots, BGM can be stressful. Power struggles.
Vigilance around hypoglycemia.
EARLY SCHOOL-AGE ( 4-6 yrs.)
Normal Developmental Tasks:
Cognitive Growth, Cause-Effect Thinking
Social Relationships Outside Family (peer & adult)
Challenges for parent when child has DM:
 Teamwork transitions to the school setting =
apprehensions by child, parent, and school. Intensive
regimens require support.
 Parent maintains primary involvement in DM tasks; yet
parent must educate a school DM team and advocate about
DM. Must educate & then trust other caregivers in the
school.
SCHOOL-AGE ( 7-11 yrs.)
Normal Developmental Tasks:
Rapid development of skills (cognitive, athletic,
artistic, physical)
Importance of dyadic friendship and team play
Foundation of self-esteem
Challenges for parent when child has DM:
Child with DM needs to participate with peers! Thus,
teamwork expands to peer group’s families, coaches, etc.
Parents must sustain involvement in DM tasks while
fostering child autonomy.
Intensive regimen allows flexibility; requires work!
Tasks of Young Transitioning Teens (1113 yr.) and parents
 Pubertal changes impact self-image.
 Peers increase in value (vulnerable).
 Privacy is important.
 Power shifts in P-C relationship increase family conflict.
 Parent learns to acknowledge this is a period of insecurity
and intensity, to negotiate, to have consistent expectations,
to set limits, to maintain teamwork involvement & support.
Developmental tasks Mid-Late Adolescence
(15-17 yr) & parents
 Consolidating Identity Development (self-image, body
image, sexuality, future education/training,
employment)
 Beginning to plan for transition after high school
 Peer Group has priority
 Cognitive growth (abstract thought, problem-solving)
Parent continues to negotiate, has high and
consistent expectations, sets limits and consequences
for rule violation ; maintains supportive involvement
(through monitoring).
Lessons from research on Mid-Late
adolescents with T1D
 Increased incidence of depression in older teens with T1D.
(McGrady & Hood 2010 ; Lawrence et al 2006).
 Ped. clinicians who care for teens with T1D need to have an
increased index of suspicion for depression; have referral
source identified. (Grey et al, 2002)
 Depression vs. “diabetes burnout”
3. General Tips for Enhancing Family
Teamwork
1. Avoid ‘blame and shame’ around BG monitoring.
a.) Don’t say “good “ & “bad” BG levels
b.) Praise the behavior of BG checking, not the number.
2. Be alert for ‘diabetes burnout’ & ‘miscarried helping’
“Burn-Out”
 “A common
response to a
chronically difficult
and frustrating job,
where the
individual works
harder and harder
each day and yet
has little sense that
these actions are
making a real
difference.”
“Burn-Out”
 “Feelings of helplessness, hopelessness,
irritability and hostility are also common,
resulting in a state of chronic emotional
exhaustion.”
Sample Session #6
Diabetes Burnout
•Diabetes burn-out is preventable.
 Watch for the early signs of burnout, and
find ways to help relieve the stress.

Talk about your negative feelings about
diabetes.
 Set realistic goals with your health care team.
 Think of ways that your family and friends can help ease the
burden of diabetes.

Make changes in your diabetes care one small step at a time.
 Diabetes is not about “passing” or “failing.”

NO ONE can successfully manage diabetes all alone
How Diabetes Contributes to Burn-Out

Behavior change is the foundation of diabetes
treatment. Yet other factors (hormones, stress,
illness, growth, and ??) affect blood sugar levels.

Following medical prescription does not guarantee
stable, safe blood sugar levels. However, parent and
patient may feel 100% responsible for blood sugar
readings.

What is the impact on family members?
The Process of “Miscarried Helping”
 The failure of well-intentioned attempts to
help because they are

Excessive

Untimely

Inappropriate (shame-inducing)
The Process of “Miscarried Helping”
“ How a family member’s investment in being
helpful and achieving a positive outcome for
the patient may paradoxically lead to
interactions over time that are constraining
and detrimental to the patient’s self-care,
well-being and good health outcomes.”
(Anderson & Coyne, l991)
“Miscarried Helping Cycle”
(Anderson &Coyne 1991)
A Closer Look at this Vicious Cycle
“High” or “Low”
Blood Sugars
Families feel frustrated
& Discouraged
Families may worry
about complications
Kids Don’t Want to
Check & Find it Harder
to Tell the Truth
Parents May
Accuse & Criticize
Kids Feel Discouraged
& Blamed
Outcomes of “Miscarried Helping”

Parent worries more and blames child.

Child/Adolescent feels bad about parent and about self and
decreases cooperation with treatment.

Power Struggle begins, Authority vs. Autonomy!

Poorer diabetes outcomes.

Everyone in the family has lost sight of the original illnessrelated problem, improving blood sugar control.
Preventing and Coping with
Burn-Out and Miscarried helping: The 4 R’s

Realistic goals

Reduce blame and criticism

Reach for progress –not perfection.

Recognize negative feelings and frustrations about disease
management as normal and important to voice.
Summary
1. Behavioral research on optimal parent behavior for children
with diabetes:
age-appropriate involvement in diabetes management tasks
with minimal diabetes-specific conflict.
2. DM adds uniquely to the ‘Challenges of Parenting’ at each
stage of child development, infancy through teen years.
And parents raising a child with diabetes faces more tasks:
living with uncertainty but with courage, hope,& optimism;
constantly educating & advocating, foster autonomy while
staying involved.
Summary - 2
3. General tips for enhancing family teamwork:
a.) Avoid blame and shame over BG monitoring
b.) Be alert for ‘Diabetes Burnout’ and ‘Miscarried
Helping’
c.) Cope with these threats by focusing on the 4 R’s:
Realistic goals
Reduce blame and criticism
Reach for progress vs. perfection
Recognize and validate negative emotions in
diabetes
= Resilience