Family Teamwork and Type 1 diabetes

1. 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

2. 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

3. 1. Lessons from Research: What are the family factors that predict optimal adherence & glycemic control? • Developmentally-appropriate parent involvement in DM management tasks. • Lower levels of parent-child conflict about DM management.

4. 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.”

5. 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.

6. 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)

7. 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)

8. 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.

9. 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; Miller- Johnson et al 1994 ;Viner et al 1996; Davis et al 2001; Anderson et al 2002; Anderson 2004).

10. 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?”

11. Avoid Shame and Blame Around BG That scares me! It could cause complications! Dad’s really mad at me! He’d be happier if my blood sugar were 120 or if I didn’t check at all! 385?! Why is it so bad? What did you eat? Dad, my blood sugar is 385. 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.

12. 2. Normal Developmental Tasks of Childhood/Adolescence Challenges to family teamwork at different stages of child development: infancy –adolescence.

13. 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.

14. 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.

16. 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.

18. 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.

20. 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!

22. Tasks of Young Transitioning Teens (11-13 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.

24. 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).

25. 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”

26. 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’

27. “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.”

28. “Burn-Out” • “Feelings of helplessness, hopelessness, irritability and hostility are also common, resulting in a state of chronic emotional exhaustion.”

29. Sample Session #6Diabetes 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

30. 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?

31. The Process of “Miscarried Helping” • The failure of well-intentioned attempts to help because they are • Excessive • Untimely • Inappropriate (shame-inducing)

32. 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)

33. “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

34. 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 illness-related problem, improving blood sugar control.

35. 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.

36. 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.

37. Summary - 2 • 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 criticismReach for progress vs. perfectionRecognize and validate negative emotions in diabetes = Resilience