Families and Diabetes
(and Providers)
Donna Follansbee, PhD
Rita Temple-Trujillo, LCSW, CDE
Barbara Davis Center - UCHSC
“peter comes with
instructions…”(continued)
Current push to achieve better glycemic
control through the use of more
technology : MDI, Pump, CGMS.
•Some families will do great
•Some families will not do so well
•Technology alone will not help us
reach goals. Careful assessment of
family is needed.
Newer Technologies:
• MDI
• Pumps
• Continuous
Glucose
Monitoring
Promise of better control
Has it been
achieved?
Hvidoere Study Group on IDDM
• 21 centers worldwide
• 1998 to 2005
• Despite advances in treatment (insulin
analogues, basal-bolus regimens, CSII) only
2 centers significantly improved mean A1c
levels
• These centers intensified patient-center
contact considerably; they did not alter insulin
regimens
Hvidoere Study Group on Childhood Diabetes, “Continuing Stability of Center Differences in Pediatric Diabetes
Care: Do Advances in Diabetes Treatment Improve Outcome? Diabetes Care 2007
The Patient is the System
• Provider patient relationships are critical
to healthy outcomes
• The “patient” is not just the child or teen:
it is the whole family
Family Styles
• Enmeshed and/or Organized:
•
•
•
•
•
Close
Dependent
Rule oriented
Low overt conflict
Busy
Family Styles, continued
• Disengaged and/or Chaotic
•
•
•
•
•
Distant
Independent
Few rules
High overt conflict
Busy
Styles cont….
• Psychosomatic
•
•
•
•
•
Enmeshed
Overprotective
Rigid
Conflict avoidant
Child triangulated
• Just Right
•
•
•
•
•
Connected
Interdependent
Flexible
Conflicts resolved
Appropriate
hierarchy
Responsibility
Who does what in IDDM care?
• Mothers are primary parent
• Task management
• Emotional support
• Child responsibility usually increases
with age
• Parent responsibility increases with
complexity of regimen
Hassle Factor
If conflict is high, moms
yield responsibility to
maintain peace
D.A.D.S.
• When dads less involved in care:
• Poorer adherence
• Poorer health status
• When dads more involved in care:
•
•
•
•
Less impact of IDDM on family functioning
Fewer maternal psychiatric symptoms
Higher marital satisfaction
Higher family satisfaction
Gavin and Wysocki 2002,2006
Old wisdom: “start ‘em young”
• Children should
assume
responsibility for self
care
• Tasks tied to age:12
• Shots
• Diet
• Schedule
• Avoid creating
dependence
“Assuming Responsibility for Diabetes
Management: What Age? What Price?”
• Knowledge:
• Performance:
necessary but not sufficient
errors and forgetting
• Cognitive Complexity: level of maturity
and ability to analyze
• Locus of Control: internal vs external
• Family Factors: styles
• Perceptions: child vs parent
Follansbee, Donna S. Diabetes Educator 1989
Emotional cost of care
 Frequency of parenting stress
increases with:
 Parents perceived lower self-efficacy for
diabetes regimen
 Greater parental responsibility for regimen
 Greater parental fear of hypoglycemia
 Use of MDI vs. CSII
Emotional cost of care…
• Difficulty of parenting stress
increases with:
 Greater parental responsibility for
regimen
 Greater parental fear of
hypoglycemia
 Use of MDI instead of CSII
Streisand et. al. 2005
Who’s on First?
• Adherence and control worsen when:
• Parents report little or no responsibility for IDDM
care
• Parent/child reports of responsibility are
incongruous
• Adherence and control improve with:
• High levels of parental support (younger children)
• Low levels of critical/negative parenting (teens)
Lewin, et.al. 2006
Balancing Act
Structure
Autonomy
Control
Behavioral Monitoring
Self Care
Putting it all together…
family
child
provider
tools
The vicious cycle of miscarried helping
Anderson BJ, et al. Diabetes Care 1999
Parents’ worries,
concerns, fears
Child feels accused,
criticized, blamed,
incompetent
Parents and child
become frustrated,
discouraged,
and angry
Decreased motivation,
desire for collaboration,
desire for honest discussions
Providers  system
The vicious cycle of miscarried helping
(providers)
Providers’ concern
about A1c, complications
Child feels criticized,
blamed or hopeless
provider and child
become frustrated,
discouraged
decreased motivation,
collaboration, honesty,
or desire for change
How do we avoid this scenerio?
Provider/Patient relationshps are
critical to healthy outcomes.
• We have the same goals (safe and
healthy), but different perspectives
• Acknowledge: this is a complex disease
• Team work
• Most families are doing the best that they
can and need our support to do more.
“Parents, teens, and
diabetes” Tim Wysocki, PhD
Warmth and empathy
Defining goals
Complete autonomy is
a myth
Communication and
conflict resolution
Motivational interviewing
William Miller, PhD & Steven Rollnick, PhD
• Motivation to change comes from the patient
• Behavior change means dealing with the
“conflict”/ambivalence around change
• Advice rarely works
• Listen
• Provider style is critical: collaboration
Ask
•
•
•
•
How’s life?
What questions do you have today?
Are you concerned about your A1c?
What is the hardest thing about having
diabetes? (child and parent)
• Tell me what you’ve tried working on since
last visit.
• What do you think we need to do
Acknowledge
• Changing behavior is hard
• Ambivalence
• Parents: Who does what around
diabetes care?
• What happens?
• What do we need to change to make
this easier/better?
Review
• People fall into patterns…we have good
intentions, but fall back into old habits
• Keep it simple--1 change: What should
we work on?
• Support
• What do we need to do to keep
momentum?
Build on Success
•
•
•
•
•
•
Specific plan
How will family support?
Feedback loop
Focus on behavior (not b.g)
Support problem solving
“JOB”
“The discovery of insulin was only
the beginning, diabetes was a far
more complicated disease than
anyone had realized.”
quote from The Discovery of Insulin by Michael Bliss
1982