1. It’s The Obstacles You Can’t See That Can Be Dangerous: Psychological Factors in Diabetes Jody Thomas, Ph.D. Licensed Clinical Psychologist Children’s Health Council Stanford, CA

2. People instinctively move toward health. Your job is not to “fix” them. It is your job to remove the obstacles and give them the tools to fix themselves.

3. PSYCHOPATHOLOGY Rates of pathology do not appear to be much greater than they are in the general population. The impact of the pathology, however, can be much greater and more disruptive to health care. Rates of pathology do not appear to be much greater than they are in the general population. The impact of the pathology, however, can be much greater and more disruptive to health care. Higher levels of depression are associated with higher A1c’s and increased number of hospitalizations. Higher levels of depression are associated with higher A1c’s and increased number of hospitalizations. Higher levels of parent anxiety are associated with higher A1c’s, and lower child motivation for self care. Higher levels of parent anxiety are associated with higher A1c’s, and lower child motivation for self care.

4. Depression: lack of motivation, hopelessness, helplessness, self- injury/suicidality Depression: lack of motivation, hopelessness, helplessness, self- injury/suicidality Anxiety: can lead to hyper vigilance and/or avoidance Anxiety: can lead to hyper vigilance and/or avoidance Eating Disorders: both anorexia and restricted eating patterns. Eating Disorders: both anorexia and restricted eating patterns. PTSD: dissociation, depressed mood, lack of attachment to the body PTSD: dissociation, depressed mood, lack of attachment to the body ADHD: difficulty with organization ADHD: difficulty with organization

5. Skills needed for good diabetes management:

6. Ability to appreciate future consequences Ability to appreciate future consequences Impulse control Impulse control Delay of gratification Delay of gratification Consistent good judgment Consistent good judgment High degree of social skill finesse High degree of social skill finesse Great time management Great time management Sense of personal responsibility Sense of personal responsibility Good sense of self Good sense of self

7. Skills kids are still developing and completely normally generally don’t have:

8. Ability to appreciate future consequences Ability to appreciate future consequences Impulse control Impulse control Delay of gratification Delay of gratification Consistent good judgment Consistent good judgment High degree of social skill finesse High degree of social skill finesse Great time management Great time management Sense of personal responsibility Sense of personal responsibility Good sense of self Good sense of self

9. Aspects of normal development that make management challenging: Testing limits Testing limits Increasing desire for independence Increasing desire for independence Developing good judgment through trial and error Developing good judgment through trial and error Increased desire to fit in with social groups Increased desire to fit in with social groups Struggles with identity development Struggles with identity development Sense on invulnerability Sense on invulnerability

10. ADJUSTMENT PROCESS Adjustment is an ongoing process that is constantly changing: there are different issues at different points in time for the child and the parent. Adjustment is an ongoing process that is constantly changing: there are different issues at different points in time for the child and the parent. An enormous amount of information and education is required at initial diagnosis. An enormous amount of information and education is required at initial diagnosis. Diagnosis typically occurs during crisis, and is an intense emotional experience, which can interrupt the learning/adjustment process. Diagnosis typically occurs during crisis, and is an intense emotional experience, which can interrupt the learning/adjustment process.

11. Parent process is very different from the child process, though they play off each other. Parent process is very different from the child process, though they play off each other. Denial, anger, sorrow, and fatigue often hit at different times for both child and caregivers. Denial, anger, sorrow, and fatigue often hit at different times for both child and caregivers. Normal child development often causes problems with disease management. Normal child development often causes problems with disease management.

12. ADHERENCE BEHAVIORAL SKILLS DESIRED HEALTH BEHAVIOR MOTIVATION INFORMATION

13. INFORMATION Basic knowledge about disease Basic knowledge about disease Personal beliefs and constructs about the disease Personal beliefs and constructs about the disease There are often gaps in knowledge, particularly when the child is diagnosed at an early age. There are often gaps in knowledge, particularly when the child is diagnosed at an early age. Constantly evolving technology makes it difficult to keep up and use it effectively. Constantly evolving technology makes it difficult to keep up and use it effectively.

14. MOTIVATION Personal motivation: Personal motivation: Personal worth put on short and long term consequences Personal worth put on short and long term consequences “Cost” of good self care vs. “cost” of longer term consequences. “Cost” of good self care vs. “cost” of longer term consequences. Social motivation: Social motivation: Perceptions of family attitudes Perceptions of family attitudes Perceptions of peers attitudes Perceptions of peers attitudes

15. BEHAVIORAL SKILLS Testing blood sugar Testing blood sugar Counting carbs Counting carbs Adjusting insulin doses Adjusting insulin doses Knowing how to manage situations (ketones, etc), and appropriately problem solving Knowing how to manage situations (ketones, etc), and appropriately problem solving Carrying necessary equipment Carrying necessary equipment Determining emergent from non-emergent situations Determining emergent from non-emergent situations Negotiating and collaborating with parents Negotiating and collaborating with parents Self-advocating and collaborating with the medical team Self-advocating and collaborating with the medical team Navigating social situation and managing peer interactions Navigating social situation and managing peer interactions Dealing with disease in the school environment Dealing with disease in the school environment Recognizing patterns in their blood sugars, and adjusting their care accordingly Recognizing patterns in their blood sugars, and adjusting their care accordingly

16. PARENT BEHAVIORAL SKILLS Basic care skills (similar to kids) Basic care skills (similar to kids) Determining emergent from non emergent situations Determining emergent from non emergent situations Communicating effectively with child Communicating effectively with child Collaborative problem solving with child Collaborative problem solving with child Scaffolding but not controlling care Scaffolding but not controlling care Controlling judgment behaviors Controlling judgment behaviors Giving up control over care at the “right” pace Giving up control over care at the “right” pace Collaborating with medical teams Collaborating with medical teams Dealing with schools, including possibly arranging 504 plans Dealing with schools, including possibly arranging 504 plans Trusting your child Trusting your child Allowing for imperfection Allowing for imperfection Separating your child from their behavior Separating your child from their behavior

17. FAMILY DYNAMICS Parents attitudes and ideas influence child’s attitude and management, both positively and negatively Parents attitudes and ideas influence child’s attitude and management, both positively and negatively Differing levels of parental involvement are common and often cause problems Differing levels of parental involvement are common and often cause problems Over control often fosters resentment Over control often fosters resentment Successful dynamics require change and adjustment over time Successful dynamics require change and adjustment over time

18. Efficacious communication patterns must be established Efficacious communication patterns must be established Over dependence on numbers (blood sugar levels and A1c) leads to difficulties Over dependence on numbers (blood sugar levels and A1c) leads to difficulties Shame vs. empowerment Shame vs. empowerment Power struggle vs. collaboration Power struggle vs. collaboration Guilt is often a major theme Guilt is often a major theme Disease can be distraction from others issues at play Disease can be distraction from others issues at play Sibling issues require attention Sibling issues require attention