Harold Starkman MD Gloria Henriquez-Lopez LCSW Nicole Pilek LCSW BD Diabetes Center

1. Session #E3a October 5, 2012 Conversations with Teens their Families and Providers:Developing a Systemic Collaborative Approach for Managing Poorly Controlled Type 1 Diabetes Harold Starkman MD Gloria Henriquez-Lopez LCSW Nicole Pilek LCSW BD Diabetes Center Goryeb Children’s Hospital Morristown, NJ Collaborative Family Healthcare Association 14th Annual Conference October 4-6, 2012 Austin, Texas U.S.A.

2. Objectives • After this presentation, the participant should be able to: • Identify barriers and challenges that affect the management of adolescents with poorly controlled type 1 diabetes from an integrated systemic perspective. • Explain how relationships between diabetic adolescents, their families and health care team affect home diabetes management. • Present a new collaborative model for adolescent diabetes care which may have implications for improved management of other chronic medical conditions.

3. Faculty Disclosure • The BD Diabetes Center High Risk Diabetes Project Is supported by grants from the HAPI Foundation and BD • We have not had any other relevant financial relationships during the past 12 months.

4. Presentation • Overview of Study Population • Project Goals and Methodology • Family Interactions/Collaboration • Collaboration between Patient/Family and Diabetes Medical Team • Collaboration of Medical Care Team with Mental Health Providers • Summary/Conclusions

5. Project Overview • There is a small but significant subgroup of children and adolescents with diabetes who have chronically elevated blood sugars • These patients account for over 80% of hospital re-admissions and emergency department visits. • This group is also at high risk for diabetes-related complications and early mortality. • Medical care for the high risk population accounts for a large proportion of diabetes-related health care costs. • This population is in many ways, an “orphan” population.

6. Historical Approaches to High Risk Diabetes Management • Structural Family Therapy (Minuchin) • Educational/Support Groups • Referral to Diabetes Camps • Hospitalization (Cumberland) • Motivational Interviewing • Newer High Risk Intervention Programs • Multiphasic Therapies (Wysocki) with Incentives • Family Educational/Parenting Skills Reinforcement (Anderson) • Psychosocial Screening at Diabetes Diagnosis (Schwartz)

7. Limitations of Interventions • Limited “Buy In” from Patients & Their Families • Lack of a Multi-Systemic Approach to Evaluation and Treatment • Intervention when poor blood sugar control has become chronic and behaviors have become ingrained • Sub-Optimal Long Term Outcomes • Cost

8. What Makes Diabetes Different from Other Chronic Medical Disorders? • Complicated medical regimen • Need knowledge base, effective family communication & problem solving skills • Diabetes affects all aspects of day to day living • Child doesn’t look or act sick • Diabetes doesn’t go away with treatment or over time. • Poor blood sugar control can result in diabetic complications, but there is no immediate negative feedback from elevated blood sugars. Diabetes management is primarily the patient’s/family’s responsibility

9. Families As Experts (Frankael) • Data was collected from in-depth, semi-structured whole family interviews • Criteria for inclusion were 3 or more diabetes related hospitalizations within the preceding 18 months or HgbA1C >8.5% for over 6 months • Grounded Theory was incorporated as methodological framework • In view of the scope of our research questionnaire, we incorporated data analysis saturation (Glaser & Strauss 1967, Strauss& Corbin 1998) as a guide for trustworthiness.

10. Family Interview • Relational impact of diabetes care on the family. • Stories of family pride • Family legacies related to medical experiences • Relational patterns surrounding diabetes tasks • Transition of tasks from parents to teen’s control • Diabetes care team/family relationship

11. Study Methods 49 “high risk” families were invited to participate 23 (47%) were interviewed; 26 families (53%) declined. Interviews were videotaped and reviewed by 2 social workers and a pediatric endocrinologist Themes were coded for analysis using Transana 2.41, a qualitative software package. After the initial interview, families were offered short term family intervention, at no cost

12. Baseline and Outcome Parameters • Epidemiologic (age, ethnicity, SES) • Diabetes (age of onset, duration, HgbA1C) • Outcome Parameters (re-admissions, HgbA1C)

13. Demographics of Study Population • 13 females and 10 males • Average Age: 15.2 +/- 1.8 years (range 12-18) • Average Diabetes Duration:7.0+/-4 years (range 2-14 ) • Average HgbA1C: 10.4+/-1.5 % (range 8.5-14) • Race /Ethnicity • 4 Latino • 15 Caucasian • 2 African American • 2 Asian

14. Demographics-2 • Annual Income • 8 Families earn >$150,000 • 1 Family earns between $100,000 and $150,000 • 5 Families earn between $75,000 and $100,000 • 4 Families earn between $24,000 and $75,000 • 4 Families earn <$24,000 • 1 Families elected not to provide their income • Family Health History • In 15 out 23 (65.2%) of families, an immediate family member suffers from a chronic medical condition • Religious Practice • 15 out of 23 (65.2%) families are actively involved

15. Family Interview Themes

16. High Risk Family InterviewsKey Themes • There are many factors that can contribute to poorly controlled diabetes. • Families often struggle to “do their best”, even if their best does not translate into optimal diabetes management.

17. “No human being is constituted to know the truth, the whole truth, and nothing but the truth; and even the best of men must be content with fragments, with partial glimpses, never the full fruition” William Osler MD

18. Psychosocial Stressors Unknown to Medical Providers Revealed In Family Interviews • Parental Chronic Illness • Marital/ Parental Conflict • Undiagnosed Depression and Other Psychiatric Issues • Issues related to SES (underinsurance, poverty, discrimination based on race, gender etc.) • History of Sexual Abuse • Parental Substance Abuse

19. PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES Contextual Influences FEELING BEHAVIOR BEHAVIOR FEELING Family and Over Involved Criticize Shame Avoid Disengage Defensive Under Involved Withdrawn Distant Silent Avoid Disengage Frustrated Inadequate Helpless Hopeless Angry Misunderstood Alienated Judged Afraid Guilty Frustrated Inadequate Helpless Hopeless Angry Guilty Diabetes Care IMPASSE DM Patient Team

20. A Closer Look at the Family Dynamics around Diabetes FEELING BEHAVIOR FEELING BEHAVIOR Frustrated Inadequate Helpless Hopeless Angry Misunder-stood Alienated Judged Afraid Guilty Diabetes Frustrated Inadequate Helpless Hopeless Angry Guilty Care Over Involved Criticize Shame Avoid Disengage Defensive Under Involved Withdrawn Distant Silent Avoid Disengage IMPASSE Team DM

21. Interview Questions • How does the family organize itself to manage diabetes tasks? • How do family members feel about diabetes tasks and the interactions related to completing these tasks? • What conflicts occur related to diabetes management?

22. Mother Mother Father Father 11.5% 7.7% Child Child Relational Family Patterns Related to Diabetes Care: Dyadic Conflict

23. Father Mother Child Child Child Mother Father Mother Father (34.6%) (19.2%) (15.4%) Relational Family Patterns Related to Diabetes Care: Triadic Conflict

24. Relational Family Patterns Related to Diabetes Care: Disengagement Father Mother (11.6%) Child

25. Family Collaboration, Conflict and Disengagement: A Continuum. • Families and individual family members struggle to “do their best”, even if their best does not translate into optimal diabetes management. • Different perspectives on “doing one’s best” result in tensions among family members that frequently evolve into intense conflicts. • The higher the intensity of the conflict, the lower the possibility of effective family collaboration around diabetes care and vice versa. • The demands of diabetes care added to an already overstressed family often overwhelms the capability of the system. Family members then give up “doing their best” and disengage from diabetes care.

26. PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES Contextual Influences FEELING BEHAVIOR BEHAVIOR FEELING Family and Over Involved Criticize Shame Avoid Disengage Defensive Under Involved Withdrawn Distant Silent Avoid Disengage Frustrated Inadequate Helpless Hopeless Angry Misunderstood Alienated Judged Afraid Guilty Frustrated Inadequate Helpless Hopeless Angry Guilty Diabetes Care IMPASSE DM Patient Team

27. “Oh God, I am about to hear these people (medical team) telling me what I am not doing, so I guess that’s the way my daughter feels sometimes when she says that I don’t understand that she is trying her best to take care of diabetes. I also get frustrated when they, (the medical team),doesn’t understand that I am trying my best” Corema .- Mother of a 14 year old girl, diagnosed with diabetes six years previously ,and repeatedly hospitalized for 6 months previous to the interview.

28. JH Janie is a 12 year old girl who developed diabetes at age 8 years. Her blood sugars have been poorly controlled in spite of multiple regimen adjustments and educational interventions. • JH EDIT 2.wmv

29. Provider Interviews Each member of the BD Diabetes Center medical care team participated in a semi- structured interview. Questions were focused on past personal and professional experiences with chronic disease as well as their beliefs related to the management of adolescents with poorly controlled diabetes.

30. Demographics-Medical Care Providers • Diabetes Care Team • 6 Pediatric Endocrinologists • 4 Nurses (3 NP’s 1 RN) • 1 Registered Dietitian • Gender • 2 males (both physicians) • 9 females • Ethnicity • 8 Caucasian • 3 Asian (physicians) • No provider has a family history of type 1 diabetes

31. DIFFERING PERCEPTIONS OF FAMILY & DIABETES CARE PROVIDERS

32. Provider/Family Interactions When Diabetes Is Not Going Well DIABETES HEALTH CARE TEAM FEELINGS FAMILY FEELINGS Frustrated Inadequate Helpless Hopeless Angry Guilty Frustrated Inadequate Helpless Hopeless Angry Misunderstood Alienated Judged Afraid Guilty BEHAVIORS BEHAVIORS Over Involved Criticize Shame Avoid Disengage Defensive Under Involved Withdrawn Distant Silent Avoid Disengage

33. Family/Medical Team Collaboration • Diabetes care providers are limited by the classical medical approach, and often only have a limited perspective of their patients and their families • Dynamics between families and diabetes care providers often mirror family dynamics related to diabetes management • Repeating negative interactions often result in disengagement of both the family and medical provider. resulting in missed visits and eventual drop out from follow up.

34. PROVIDER/FAMILY DYNAMICS IN ADOLESCENTS WITH POORLY CONTROLLED DIABETES Contextual Influences FEELING BEHAVIOR BEHAVIOR FEELING Family and Over Involved Criticize Shame Avoid Disengage Defensive Under Involved Withdrawn Distant Silent Avoid Disengage Frustrated Inadequate Helpless Hopeless Angry Misunderstood Alienated Judged Afraid Guilty Frustrated Inadequate Helpless Hopeless Angry Guilty Diabetes Care IMPASSE DM Patient Team

35. Short Term Family Intervention • Of 23 families who completed a diagnostic interview 16 (69.6%) returned for the family intervention • Some families required referral for longer term treatment and/or more intensive/ specialized intervention (medication, couples issues, drug dependency etc.) • Outcomes data related to the short and long term efficacy of our therapeutic intervention are being collected and analyzed.

36. Diabetes Nurse Educator BEHAVIOR FEELING Physician BEHAVIOR FEELING Over Involved Criticize Shame Avoid Disengage Dietitian Defensive Under Involved Withdrawn Distant Silent Avoid Disengage Frustrated Inadequate Helpless Hopeless Angry Misunder-stood Alienated Judged Afraid Guilty Diabetes Frustrated Inadequate Helpless Hopeless Angry Guilty Care Diabetes Social Worker Family and IMPASSE CONFLICT CONFLICT CONFLICT CONFLICT Team Psychiatrist DM Family Therapist Patient Psychologist/Social Worker A Closer Look at the Diabetes Care Team

37. Traditional Communication Matrix When Working With High Risk Families

38. Interventions to Improve Medical/Mental Health Collaboration • The medical diabetes care team was encouraged to observe a series of family interviews to improve interviewing skills and better understand family dynamics • Procedures for referral to our High Risk Program were simplified • Updates for families participating in the High Risk Program were shared and discussed at monthly diabetes management meetings.

39. Improving Communication: Closing the Loop

40. Family Medical Professional Mental Health Professional TEEN

41. Medical Team Comments Related to High Risk Intervention Program • “I’m sending you a high risk family to fix .” • “”The parents are unfit . Can you place John in a group home?” • “You’ve been seeing this family for 3 months. Things aren’t any better. Remember, this patient may die from her high sugars” • “I still don’t know what’s going on at Sue’s counseling sessions.” • How come my patient hasn’t returned for medical follow- up for over 9 months?” • Why are we applying for funding for high risk diabetic patients when the money might fund something more cost efficient?”

42. Crisis Mode • Family • Family • Medical Professional • Mental Health Professional TEEN • Medical Professional • Mental Health Professional

43. Crisis Mode • Family TEEN • Medical Professional • Mental Health Professional

44. Collaboration Is Not For Sissies

45. Potential Collaborative Barriers From the Medical Team’s Perspective • Differing professional cultures • Hierarchal vs. collaborative relational approach • Different knowledge base and perspective • Lack of understanding of the psychotherapeutic process • Liability Risks • Ambivalence about referring: • Referring the patient can be seen as a failure • Template for sharing patient care is poorly defined

46. Potential Collaborative Barriers from the Mental Health Provider’s Perspective • Additional complexity/risk engendered medical diagnosis • Mental health provider is on “medical turf” • Historical hierarchal nature of professional interaction • Pressure to “fix” from medical team • Medical providers’ “unrealistic expectations and overestimation of mental health resources

47. Recommendations:Medical/Mental Health Provider Collaboration: Recommendations: • Build diabetes knowledge base of mental health providers • Build family dynamic knowledge base of medical providers • Reframe role of mental health professional as the “relational repair expert” as opposed to the “diabetes fixer” • Incorporate mental health provider expertise from time of diabetes diagnosis • Recognize the need for ongoing dialog between diabetes and mental health providers Neither medical nor mental health providers independently can be effective agents of change for high risk diabetes families

48. Conclusions • Strained relationships between families their medical and mental health providers are often associated with sub-optimally controlled diabetes. • At times of crisis, collaboration within the family, between the family and medical team and between the medical and mental health provider is crucial, yet often difficult to achieve. • Sub-optimal collaboration at any level often reverberates throughout the whole system. • We hypothesize that positive intervention at any level of the system may improve both diabetes management and family functioning.

49. …Crisis • Family • Medical Professional • Mental Health Professional TEEN

50. Family Ideal …Crisis Medical Professional Mental Health Professional TEEN