Stan De Loach, Ph.D. Organizational Consultant Certified Diabetes Educator Clinical Psychologist

1. Learning for leadership, in the physical realm Vital learning through experience for children and adolescents who have type 1 diabetes mellitus Stan De Loach, Ph.D. Organizational Consultant Certified Diabetes Educator Clinical Psychologist México, Distrito Federal, México A. K. Rice Institute for the Study of Social Systems Second Biennial Symposium Chicago, Illinois 3 May 2008 saludo@usa.net

2. Type 1 diabetes mellitus(DM1) Worldwide incidence 2000 total: 15,000,000 2010 total: 22,000,000 2025 total: 40,000,000 ± 10% of all cases of DM Journal of Internal Medicine, 2000, 247, 301-310

3. Type 1 diabetes mellitus(DM1) Worldwide incidence Incidence of DM1 is increasing 3 – 13% per year ...for reasons unknown 47% higher in 2010 than in 2000 Journal of Internal Medicine, 2000, 247, 301-310

4. Two main types(1 and 2) diabetes mellitus México realities 1996 –1997Ninthcause of death 2004 –2008Firstcause of death Each year, DM causes death for 27,400 ♀ and 25,100 ♂ Each year, AIDS causes death for 600 ♀ and 3,600 ♂, a proportion of±13to1 www.salud.gob.mx/apps/htdocs/estadisticas/publicaciones/sintesis/EfectosCIE.pdf Mortality statistics: Deaths registered in 2001. (2002). Salud pública de México, 44 (6), 565 – 581

5. Type 1 diabetes mellitus(DM1) What is it? Syndrome characterized by permanent autoimmune destruction of pancreatic  cells(insulin-producing cells) pancreas producesinadequate insulin hyperglycemia = levels of blood glucose (BG) > 99 milligrams / deciliter (mg/dL) lipid, protein, and carbohydrate (CHO)metabolism is disrupted, with life-threatening consequences

6. DM1 What is it? Insufficient insulinDM1 Lack of insulin hyperglycemia Chronic hyperglycemia diabetic complications (nephropathy, neuropathy, retinopathy, cardiopathy, premature death)

7. DM1 Mean age at diagnosis? Peak diagnosis of DM1 occurs at 14 years of age, before emotional or intellectual maturity and before economic self-reliance.

8. DM1 Where is it? 16 i 1923 J. L. after using insulin for 32 days 15 xii 1922 J. L. (with mother) before using insulin 3 years old Halle Berry – actress Gary Hall, Jr. – Olympic athlete Yours truly – survivor

9. DM1 What's to do? Educate to maintain BALANCE Injected insulins+Physical activity +Food intake

10. DM1 What's to do? Educate to maintain BALANCE Injected insulins+Physical activity +Food intake Goal: Normoglycemia (BG between 71 and 99 mg/dL)

11. DM1 What's to do? Goal of management and self-management of DM1 =Maintain normoglycemia 24 hours a day, for life Death occurs without insulin(3 days – 50 weeks) No known substitute for insulin protein exists Rx = Titrated doses of insulin (a hormone), food, and physical activity, guided by frequent self-monitoring of BG levels

12. DM1 Who will do it? Incidence of DM(all types) to double by 2025, affecting approximately 366,000,000 children, adolescents, and adults worldwide and requiring skilled care 24/7, until death Number of physicians worldwide: ~7,674,038, or .02 physician for each person with DM (WHO, 2007) Meet the interns:The person with DM1 must, in practice, become his / her own physician in order to define and apply the necessary Rx, which varies from one hour to the next.

13. DM1 Who will do it? DM1 is resource-intensive, chronic, incurable, progressive condition self-management is PRIMARY treatment modality Self-management = responsibility of person with DM1 Preparation and education for self-management of DM1 = health care providers' task?

14. DM1 Minimally effective treatment / management paradigm Independent health care specialists Nurse Physician Certified Diabetes Educator Dietitian ? ? Dentist, psychologist, ophthalmologist Person with DM1 ? This care design is typical but ineffective.

15. DM1 Current treatment and management paradigm Multidisciplinary TEAM approach Physician Dietitian knowing how to... being enabled to... wanting to... Person with DM1 Nurse Certified Diabetes Educator Dentist, psychologist, ophthalmologist self-manage DM1 and LEAD the team

16. DM1 Current treatment and management paradigm Person with DM1, the expert Leader of multidisciplinary health-care team Person with DM1 knowing how to... being enabled to... wanting to... self-manage one's own DM1 care

17. DM1 Current treatment and management paradigm Education for leadership role Education in self-management role

18. DM1 The unavoidable REQUIREMENT and CHALLENGE: For the child or adolescent with DM1 to take up the exercise of personal authority and leadership in the daily, lifelong self-management of the condition

19. DM1 Vital initial and primary learning tasks At diagnosis(usually 3 – 17 years of age), the child and parents must: • Construct a multidisciplinary health-care team (certified diabetes educator, physician, nurse, dentist, dietitian, ophthalmologist, podiatrist, pharamcist, psychologist, insurance company, hospital, government institutions) • Exchange a traditionally passive for an active role in health care professional relationships • Initiate proactive periodic communication with the health-care team for routine and emergency care (phone, e-mail, visit, lab), as well as determine frequency and appropriate purposes for contact Intersystem or intergroup skills?

20. DM1 Vital initial and primary learning tasks • Acquire 95% of relevant practical information needed to safely BEGIN obligatory treatment with insulins • Understand the meaning of a chronic, incurable condition, and the consequences of its sub-optimal treatment • Manage personal and family psychological difficulties, pre-existing or related to DM1: depression, rebellion, denial, BA dependency, fight-flight, and oneness responses • Monitor role of personal perceptions, experiences, values, beliefs and of social and familiar myths...encounter the system-in-the-mind • Make vital INFORMED decisions Here-and-now, intrapsychic, small-system processes?

21. DM1 Vital initial and primary learning tasks • Set individualized target range for BG • Focus on transformation of BEHAVIORS • Ensure normal physical growth of child / adolescent • Adopt a prevention of complications perspective (most complications are avoided with normoglycemia) • Accept that DM1 is a condition of self-management • Grow to accept responsibility for acting as the leader of one's health-care team • Accustom and teach the child to attend to his / her own body, which no one can know better • Learn to relate unique personal physiology to numerical values, 24/7 Understand leadership and responsibility as consequent to knowledge and experience?

22. DM1 Vital initial and primary learning tasks • Learn to verbalize and apply treatments (insulin, diet, exercise) • Share data (chemistry values, lifestyle behaviors) • Decide to adopt healthy life-style, or not • Solve problems involving failures, inexperience, pain, strong emotions • Learn to prepare insulin injections: how much, when, where, how to mix, how to inject one or more insulins • Draw multiple, PRECISE measurements of insulin at low doses of ½ — ¾ unit (syringe shows 25 units per inch) • Properly store opened and unopened insulin Learning from experience?

23. DM1 Vital initial and primary learning tasks • Functionalize knowledge of distinct types of insulins, their times of initial, peak, and maximum action • Treat hyperglucemia and hypoglycemia in timely fashion, 24/7 • Visually examine shoes, socks, feet, at least weekly • Self-monitor BG: Interpret and apply results for food, insulin, and physical activity adjustment • Define frequency (4 – 7 times each day) and hours for self-monitoring of BG • Correctly employ technology for self-monitoring of BG • Interpret results of self-monitoring...WHAT TO DO if high, low, or within desired range Learning from experience. Level 2.

24. DM1 Vital initial and primary learning tasks • Continually modify food, insulin, physical activity, self-monitoring content and frequency • Associate measured and unmeasured levels of BG to signs and symptoms of concurrent hypoglycemia and hyperglycemia • Know food groups: fats, CHO, proteins AND their effects on BG • Select and apportion foods: exchange equivalents, calories, weights, measurements (visual, intuitive, or metric) • Count CHO amounts in grams and exchanges Acquaintance with role of data?

25. DM1 Vital initial and primary learning tasks • Identify unique, personal insulin:CHO ratio • Understand use of alcohol (wine, beer, whiskey) • Grasp implications of food labels for BG control • Ascertain food / physical activity relationship • Adjust food, insulin, liquid requirements for vomiting, nausea, influenza, colds, abdominal pain, diarrhea • Respond correctly to sick-day crises; blood or urine measurements of ketones (drawing NRG from fat instead of CHO) Becoming one's own consulting caretaker / physician?

26. DM1 Vital initial and primary learning tasks • Be aware of effects of physical activity, appropriate aerobic physical activities, associated hormonal responses and energy requirements (meals, snacks, liquids) • Always have access to glucose • Understand delayed effects of food intake and physical activity on BG • Use glycated hemoglobin (HbA1c) to best gauge success in managing glycemic goals (each 3 mos.) • DM1...a condition of informed, constant, and self-educated balance and self-management Reflective events...attending to the passage of time?

27. DM1 Vital initial and primary learning tasks • Identify and overcome extemporaneous problems (sports, sex, infection, surgery, pizza, overnight parties, alcohol, drugs) • Manage DM1 at school (whom to tell, educate school staff, maintain supplies for emergencies) and / or job • Teach signs, symptoms and treatment of insulin imbalance • Buy, learn, and teach others the use of glucagon • Understand that signs and symptoms are not specific to either hyperglycemia or hypoglycemia • Battle depression Intersystem or intergroup negotiations?

28. DM1 Vital initial and primary learning tasks • Treat the body with insulin, a powerful hormone with effects on BG and Central Nervous System functioning • Become essentially one's own physician, with self-employment 24/7, as long as one lives Libido / destrudo tensions?

29. Education is not part of the treatment of DM1. It is the treatment. Dr. Elliot Joslin BUT... Can a child or adolescent and her / his parents quickly and effectively acquire this compendium of vital information? What sources for practical DM1 education of children and adolescents exist?

30. Campamento Diabetes Safari The Tavistock conference model... A safe, effective, and structured social context providing opportunities for children and adolescents to effect individualized, practical learning about the complex, independent, continuous self-management of their own DM1.

31. Campamento Diabetes Safari The Tavistock conference model... an intuitively appropriate structure, able to provide opportunities for experiential learning useful in self-managing DM1 and leading the health-care team.

32. Campamento Diabetes Safari Global structural design Residential, 4-day, international, educational, bilingual Full, public, transparent information (brochure with tasks, roles, boundaries, schedules)provided Campers required to sign application forms (first exercise of personal authority for most Campers) References required (physician, teacher) Unique philosophy and implementation compared to existing DM1 camps (~ Tavi and NTL) Multidisciplinary Staff, with dual roles: managers and consultants Opening plenary, very small study / work systems, plenaries, reflective events

33. Campamento Diabetes Safari Global structural design Primary stated task of Camp: to offer children and adolescents (7-18 years) opportunities to learn from personal experience about functional self-management of DM1, including pertinent emotional elements Staff: Director(♂, 61, DM1, Certified Diabetes Educator, clinical psycholgist) AssociateDirector(♀, 29, DM1, Registered Dietitian) Associate MedicalDirector(♂, 33, endocrinologist) Activities Coordinators & Monitors(♂, 27, DM1, lawyer; ♀, 28, Registered Dietitian) Chef(♂, 24, information technologist) Directorate: Director, Associate Director, Associate Medical Director

34. Campamento Diabetes Safari Structures for containment • Physical • Administrative • Clinical and technological • Political

35. Campamento Diabetes Safari Global structural design Staff's primary task: to provide opportunities for learning, through practical experience, about functional self-management of DM1 by working in the here-and-now with all issues verbally or nonverbally expressed by Campers Campers' primary task: to learn through experience about the practical self-management of blood glucose levels in the presence of DM1 Explicit recognition of self-responsibility for learning and associated behaviors; management of freedom Staff present (parents absent)as resources, providing possibilities for novel behaviors, strategies, choices, problem-solving, goals ( Institutional System Event) If Staff members do not learn, neither will Campers.

36. Campamento Diabetes Safari Global structural design Staff commitment to self-directive model of education Opportunities for self-directed learning about DM1 self-management, with professional consultation available 24/4 upon request Didactic efforts in response to requests for such (~ Institutional System Event) Opening plenary: "Campers are at all times free to learn and at all times are responsible for what they learn."

37. Campamento Diabetes Safari Global structural design Learning is understood to be an active process, a journey that transforms knowledge, abilities, and values into BEHAVIORS Learning self-management of DM1 requires information, experience, practice, and errors Attention to and work with the unconscious, irrational, unspoken, observed but unacknowledged. Dreams volunteered provide content for analysis and understanding of current system dynamics. How to interpret / understand this spontaneous pose in a group relations framework?

38. Campamento Diabetes Safari Global structural design Analysis and address of psychological defenses (depression, rebellion, fear, basic assumptions) Focus on information / consultation rather than motivation and behavioral change ( Institutional System Event) Making conscious the obvious determinants of conduct: knowledge, experience, feelings, human relations (child / parents, relatives, adolescents / peers, adults / spouse, family, colleagues) Addressing the self-destructive dependent phantasy that the adult, mother, or the physician alone can and should regulate control of BG How to interpret / understand this photo in a group relations framework?

39. Campamento Diabetes Safari Global structural design Shared beliefs and system-in-the-mind brought to temporary institution's awareness Intersystem relations aspect: parents, society, host institution, international community of DM care providers and regulators Intrasystem dynamics verbally observed and examined Plenary sessions each a.m. and p.m. Small-system nature of Campers (#14) Frequent shared management in public Designated territories for work and recreation

40. Campamento Diabetes Safari Global structural design Management and self-management (in role, in DM1) interrelated Campers are deemed responsible for and knowledgeable in their own DM1 self-management Development of capacity for responsibility for one's own destiny and quality of life Provide opportunities for children and adolescents with DM1 to take up protagonist role in management of the condition

41. Campamento Diabetes Safari Global structural design Allow thinking for oneself, deciding for oneself, forming personally meaningful goals The Staff is not "guilty" or "responsible" if the Camper with DM1 decides not to employ the corrective treatment possible, indicated, or offered The person with DM1 can accept or reject the self-management option, a decision shaped by articulated and unconscious goals and processes The Camper with DM1 possesses the authority, liberty, and responsibility for choosing if, when, and how she or he employs the educational opportunities provided

42. Campamento Diabetes Safari Global structural design Attention to Transformation (through learning from experience) of the system-in-the-mind Analysis, individual and group, of meaning (of behaviors, verbal expressions, having DM1, food choices, physical feelings, BG measurements, etc.)

43. Campamento Diabetes Safari Global structural design Explore political, psychic, spiritual implications of myths, beliefs, systems-in-the-mind: my health depends on God ("God will provide.") my fortune depends on luck (“I just happened to get DM1.”) my destiny depends on my efforts (“I am learning how to take care of my DM1.”) management depends upon the physician or certified diabetes educator (“I put everything in your hands, Doctor.”)

44. Campamento Diabetes Safari Output evaluation Significant parental satisfaction with Campers' expanded DM1 self-management skills and autonomy Significantly augmented Campers' knowledge of correct calculations of food intake and insulin dosages ...evidenced in effective behavioral changes* Not a cost-effective educational option: significant expense to benefit a small number of Campers Camper satisfaction high (90% return rate) Observable shifts in locus of control, from external to internal *Mean arrival and departure BG was 209 mg/dL and 87 mg/dL (P <.0025). Mean 3-day BG (95 mg/dL) confirmed stable euglycemia. From: Methods for achieving stable normoglycemia during an educational camp for youth with type 1 diabetes mellitus: www.continents.com/diabetes34.htm

45. Learning for leadership, in the physical realm Vital learning through experience for children and adolescents who have type 1 diabetes mellitus Stan De Loach, Ph.D. Organizational Consultant Certified Diabetes Educator Clinical Psychologist México, Distrito Federal, México A. K. Rice Institute for the Study of Social Systems Second Biennial Symposium Chicago, Illinois 3 May 2008 saludo@usa.net