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: necessary but not sufficient Performance: 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 StructureAutonomy Control Behavioral MonitoringSelf Care

Putting it all together… family provider child tools

The vicious cycle of miscarried helping Anderson BJ, et al. Diabetes Care 1999 Child feels accused, criticized, blamed, incompetent Decreased motivation, desire for collaboration, desire for honest discussions Parents and child become frustrated, discouraged, and angry Parents’ worries, concerns, fears

Providers  system

The vicious cycle of miscarried helping (providers) Child feels criticized, blamed or hopeless decreased motivation, collaboration, honesty, or desire for change provider and child become frustrated, discouraged Providers’ concern about A1c, complications

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