1. Family Teamwork and Type 1 Diabetes
Barbara J. Anderson, PhD
Professor of Pediatrics
Baylor College of Medicine
Houston, TX
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2. Texas Children’s Hospital Houston, TX
2000+ youth with diabetes
75%-Type 1
25%-Type 2
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3. Objectives
Lessons from pediatric behavioral diabetes research about families living with T1D.
II. Challenges to family teamwork at different stages of child development.
III. What is ‘success’ in raising a child/teen with T1D?

4. I. Lessons from Research
What are the family factors that predict optimal adherence, BG, & psychological health for children/teens with T1D ?
Developmentally-appropriate parent involvement in DM management tasks.
Lower levels of parent-child conflict about DM management.

5. 1. Parent Involvement in T1D mgt.
1) The “Old Message” (pre-1990): “The child with diabetes must be independent in diabetes management.”
research caused a “Paradigm Shift”
2) The “New Message” (post-l990): “The child with diabetes must work inter-dependently with parents, & this teamwork must change with development.”

6. The ‘New Paradigm’ for Parent Involvement
Developmentally-appropriate parent-youth teamwork in managing diabetes predicts optimal adherence & glycemic control (blood sugar control).
(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. 2012 ADA Standards of Care (in press)
“Clinicians should assess for unrealistic expectations by parents that child/teen can carry out diabetes management without any help.
Premature transfer of sole responsibility for diabetes management to the developing child/teen and withdrawal of parental involvement in and support for diabetes self-care tasks, especially in adolescence, predicts poor health and psychosocial outcomes. “

8. 2. Family Conflict around DM
In school-aged children & adolescents, studies consistently document that lower levels of diabetes family conflict are related to better adherence & 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; Berlin et al, 2012 )

9. Diabetes-related family conflict predicts poor adherence, diabetes outcomes & coping.

10. 2012 ADA Standards of Care (in press)
“Providers need to directly ask about diabetes- related family conflict and stress, and negotiate an acceptable resolution with child/adolescent and parents(s);
However, if family conflict is extremely entrenched and cannot be resolved by the diabetes team, referral should be made to a mental health specialist who is knowledgeable about type 1 diabetes in youth and family functioning.”

11. II. Applying this evidence across child/teen development
Lessons from research on Parent involvement and family conflict at each stage of child/adolescent development.
Prevent Premature Parent Withdrawal of T1D Involvement
Minimize Family T1D Conflict

12. INFANCY (0-1 yr.) Normal Developmental Tasks: Physical Growth
Develop trusting attachment or bond with caregiver(s)

13. Involvement & Conflict Challenges for Parents of T1D Baby
Very stressful period; Intense grief, Few supports. Vigilance around hypoglycemia, especially at night. Pumps & CGM may be helpful for some families.
Parent has all management responsibilities
Sometimes conflicts between parents & grandparents/other caregivers.
Avoid unrealistic expectations for BG levels.

15. TODDLER (1-3 yrs.) Normal Developmental Tasks:
Physical Growth; Brain Development
Mastery of Physical World
Sense of Autonomy, Independence, Separate “Self”

16. Involvement & Conflict Challenges for parents of T1D toddler
Unpredictable eating & activity patterns. Shots, BGM can be stressful. Vigilance around hypoglycemia Pumps may be useful.
.Parent continues to have all responsibility
Conflict: Power struggles with toddler over T1D.
Avoid Battles; Try for Calm Control. Avoid unrealistic expectations for child behavior & for BG levels.

18. EARLY SCHOOL-AGE ( 4-6 yrs.)
Normal Developmental Tasks:
Cognitive Growth, Cause-Effect Thinking
Social Relationships Outside Family (peer & adult)

19. Involvement & Conflict Challenges for parents of early-school-age T1D
Some responsibility must transition to school setting = stress felt by child, parent, & school. Intensive regimens require support.
Parent maintains primary involvement in T1D tasks; yet parent must educate school about T1D, & then trust caregivers in the school.
Conflicts with school personnel.
Say BG “check” not “test”. Avoid “good & bad” BGs, say “High / Low”, “In-Range & Out-of-Range”

21. SCHOOL-AGE ( 7-10 yrs.)
Rapid development of skills (cognitive, athletic, artistic, physical)
Importance of friendship & team play
Foundation of self-esteem

22. Involvement & Conflict Challenges for parents of school-aged T1D
Parents must sustain involvement in T1D while fostering autonomy.
Intensive regimen allows flexibility; requires work! Child with T1D must participate with peers! Responsibility expands to peer group’s parents, coaches, scout leaders etc.
Talk about BG patterns, vs. individual BG values. Praise behavior, not BG levels!

24. Tasks of Young Transitioning Teens (11-14 yr.)
Pubertal changes impact self-image
Privacy is important.
Power shifts in P-C relationship increase family conflict.
Peers are the priority!

25. Involvement & Conflict Challenges for parents of young teens T1D
Parent has to recognize this is a period of insecurity & intensity, to have consistent expectations, set limits with consequences, negotiate around parent involvement & support for T1D management.
Conflicts & frustrations increases normally in every family at puberty; protect T1D management from family conflict & stress.

27. Developmental tasks Mid-Late Adolescence (15-17 yr)
Consolidate Identity Development (self-image, body image, sexuality, future education/training, employment)
Begin to plan for life after high school (Life + Diabetes) gradual transfer of DM tasks
Bond with Peer Group
Show some Cognitive growth (but not complete!)

28. Involvement & Conflict Challenges for parents of older teens T1D
Parent : negotiate, consistent expectations, sets limits & consequences for rule violation; maintains supportive involvement in T1D
ASK teen how parent can help with T1D?
GIVE consequences for BG tasks (behavior) tied to increasing privileges (behavior).
AVOID consequences for BG levels. AVOID “Shame &Blame” for BG levels!
TRANSFER gradually responsibility for parts of T1D mgt. for which Teen has little experience—ordering supplies; understanding insurance and co-pays; advocating for yourself.

30. III. How do you define ‘success’ in raising your child or teen with T1D?

31. What defines ‘success’ in raising a child or teen with T1D?
A “Resilient” young Adult who has the capacity to adapt successfully to the demands & challenges of T1D self-management &T1D self-advocacy.
“Being resilient doesn’t mean going through life without experiencing stress & pain. Feeling grief, sadness & other emotions in the face of adversity & stress is normal. The road to resilience likes in working through the emotions & effects of stress and challenges.”

33. Factors that contribute to resilience:
Close relationships with family & friends
Positive view of yourself and confidence in your strengths & abilities
Ability to manage strong feelings & impulses
Good problem-solving & communication skills
Feeling in control
Seeking help & resources

34. Factors that contribute to resilience:
7.Seeing yourself as resilient (rather than as a victim) 8.Coping with stress in healthy ways & avoiding harmful coping strategies, such as substance abuse 9. Helping others 10.Finding positive meaning in your life despite difficult or traumatic events

35. What defines ‘success’ in raising a child or teen with T1D?
Young adult who is motivated for:
Self-Management
Self-Advocacy
Sustaining diabetes health care

36. Getting to Resilience: The 4 R’s
Realistic goals for BG and Behavior
Reduce blame & criticism
Reach for progress –not perfection.
Recognize negative feelings & frustrations about disease management as normal & important to voice.

38. Thank you for your attention! Comments? Questions?
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