Learning for leadership in the physical realm Vital

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

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

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

Two main types (1 and 2) diabetes mellitus México realities 1996 – 1997 Ninth cause of death 2004 – 2008 First cause 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 ± 13 to 1 www. salud. gob. mx/apps/htdocs/estadisticas/publicaciones/sintesis/Efectos. CIE. pdf Mortality statistics: Deaths registered in 2001. (2002). Salud pública de México, 44 (6), 565 – 581

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

DM 1 What is it? Insufficient insulin Lack of insulin Chronic hyperglycemia DM 1 hyperglycemia diabetic complications (nephropathy, neuropathy, retinopathy, cardiopathy, premature death)

DM 1 Mean age at diagnosis? Peak diagnosis of DM 1 occurs at 14 years of age, before emotional or intellectual maturity and before economic self-reliance.

DM 1 Where is it? 16 i 1923 15 xii 1922 J. L. after using J. L. (with mother) insulin for 32 days before using insulin 3 years old Halle Berry – actress Yours truly – survivor Gary Hall, Jr. – Olympic athlete

DM 1 What's to do? Educate to maintain BALANCE Injected insulins + Physical activity + Food intake

DM 1 What's to do? Educate to maintain BALANCE Injected insulins + Physical activity + Food intake Goal: Normoglycemia (BG between 71 and 99 mg/d. L)

DM 1 What's to do? Goal of management and self-management of DM 1 = 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

DM 1 Who will do it? Incidence of DM (all types) to double by 2025, affecting approximately 366, 000 children, adolescents, and adults worldwide and requiring skilled care 24/7, until death Number of physicians worldwide: ~ 7, 674, 038, or. 02 physician each person with DM Meet the interns: The person with DM 1 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. for (WHO, 2007)

DM 1 Who will do it? DM 1 is resource-intensive, chronic, incurable, progressive condition self-management is PRIMARY treatment modality Self-management = responsibility of person with DM 1 Preparation and education for self-management of DM 1 = health care providers' task?

DM 1 Minimally effective treatment / management paradigm Independent health care specialists Physician Nurse Dietitian ? Certified Diabetes Educator ? Dentist, psychologist, ophthalmologist ? Person with DM 1 This care design is typical but ineffective.

DM 1 Current treatment and management paradigm Multidisciplinary TEAM approach Physician Dietitian Nurse Person with DM 1 Dentist, psychologist, ophthalmologist knowing how to. . . being enabled to. . . Certified Diabetes Educator wanting to. . . self-manage DM 1 and LEAD the team

DM 1 Current treatment and management paradigm Person with DM 1, the expert Leader of multidisciplinary health-care team knowing how to. . . Person with DM 1 being enabled to. . . wanting to. . . self-manage one's own DM 1 care

DM 1 Current treatment and management paradigm Education for leadership role Education in self-management role

DM 1 The unavoidable REQUIREMENT and CHALLENGE: For the child or adolescent with DM 1 to take up the exercise of personal authority and leadership in the daily, lifelong self-management of the condition

DM 1 Vital initial and primary learning tasks At diagnosis (usually 3 – 17 years of age), the child and parents must: n 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 in health care professional relationships n Initiate proactive periodic communication with the health-care team for routine and emergency care (phone, e-mail, visit, lab), well as determine frequency and appropriate purposes for contact role n Intersystem or intergroup skills? as

DM 1 Vital initial and primary learning tasks Acquire 95% of relevant practical information needed to safely BEGIN obligatory treatment with insulins n Understand the meaning of a chronic, incurable condition, and the consequences of its sub-optimal treatment n Manage personal and family psychological difficulties, preexisting or related to DM 1: depression, rebellion, denial, BA dependency, fight-flight, and oneness responses n Monitor role of personal perceptions, experiences, values, beliefs and of familiar myths. . . encounter the system-in-the-mind n n Make vital INFORMED decisions Here-and-now, intrapsychic, small-system processes? social and

DM 1 Vital initial and primary learning tasks n Set individualized target range for BG n Focus on transformation of BEHAVIORS Ensure normal physical growth of child / adolescent n n Adopt a prevention of complications perspective (most complications are avoided with normoglycemia) n Accept that DM 1 is a condition of self-management Grow to accept responsibility for acting as the leader of one's health-care team n Accustom and teach the child to attend to his / her own body, which no one can know better n Learn to relate unique personal physiology to numerical values, 24/7 n Understand leadership and responsibility as consequent to knowledge and experience?

DM 1 Vital initial and primary learning tasks n Learn to verbalize and apply treatments (insulin, diet, exercise) n Share data (chemistry values, lifestyle behaviors) n Decide to adopt healthy life-style, or not Solve problems involving failures, inexperience, pain, strong emotions n Learn to prepare insulin injections: how much, when, where, how to mix, how to inject one or more insulins n Draw multiple, PRECISE measurements of insulin at low doses of ½ — ¾ unit (syringe shows 25 units per inch) n n Properly store opened and unopened insulin Learning from experience?

DM 1 Vital initial and primary learning tasks Functionalize knowledge of distinct types of insulins, their times of initial, peak, and maximum action n Treat hyperglucemia and hypoglycemia in timely fashion, 24/7 n n Visually examine shoes, socks, feet, at least weekly Self-monitor BG: Interpret and apply results for food, insulin, and physical activity adjustment n Define frequency (4 – 7 times each day) and hours for selfmonitoring of BG n n Correctly employ technology for self-monitoring of BG Interpret results of self-monitoring. . . WHAT TO DO if high, low, or within desired range n Learning from experience. Level 2.

DM 1 Vital initial and primary learning tasks Continually modify food, insulin, physical activity, selfmonitoring content and frequency n Associate measured and unmeasured levels of BG to signs and symptoms of concurrent hypoglycemia and hyperglycemia n Know food groups: fats, CHO, proteins AND their effects on BG n Select and apportion foods: exchange equivalents, calories, weights, measurements n (visual, intuitive, or metric) Count CHO in grams exchanges n Acquaintance with role of data? amounts and

DM 1 Vital initial and primary learning tasks n Identify unique, personal insulin: CHO ratio n Understand use of alcohol (wine, beer, whiskey) n Grasp implications of food labels for BG control n Ascertain food / physical activity relationship Adjust food, insulin, liquid requirements for vomiting, nausea, influenza, colds, abdominal pain, diarrhea n Respond correctly to sick-day crises; or urine measurements of ketones n from fat instead of CHO) Becoming one's own consulting caretaker / physician? blood (drawing NRG

DM 1 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) n n n Always have access to glucose Understand delayed effects of food intake and physical activity on BG Use glycated hemoglobin (Hb. A 1 c) to best success in managing glycemic n gauge goals (each 3 mos. ) DM 1. . . a condition of informed, constant, and self-educated balance and management n Reflective events. . . attending to the passage of time? self-

DM 1 Vital initial and primary learning tasks n Identify and overcome extemporaneous problems (sports, sex, infection, surgery, pizza, overnight parties, alcohol, drugs) Manage DM 1 at school (whom to tell, educate school staff, maintain supplies for emergencies) and / or job n n Teach signs, symptoms and treatment of insulin imbalance n Buy, learn, and teach others the use of glucagon Understand that signs and symptoms are not specific to hyperglycemia or n n Battle depression Intersystem or intergroup negotiations? either hypoglycemia

DM 1 Vital initial and primary learning tasks Treat the body with insulin, a powerful hormone with effects on BG and Central Nervous System functioning n Become essentially one's own physician, with self-employment 24/7, as long as one lives n Libido / destrudo tensions?

Education is not part of the treatment of DM 1. 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 DM 1 education of children and adolescents exist?

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 DM 1.

Campamento Diabetes Safari The Tavistock conference model. . . an intuitively appropriate structure, able to provide opportunities for experiential learning useful in self-managing DM 1 and leading the health-care team.

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 DM 1 camps (~ Tavi and NTL) Multidisciplinary Staff, with dual roles: managers and consultants Opening plenary, very small study / work systems, plenaries, reflective events

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 DM 1, including pertinent emotional elements Staff: Director (♂, 61, DM 1, Certified Diabetes Educator, clinical psycholgist) Associate Director (♀, 29, DM 1, Registered Dietitian) Associate Medical Director (♂, 33, endocrinologist) Activities Coordinators & Monitors (♂, 27, DM 1, lawyer; ♀, 28, Registered Dietitian) Chef (♂, 24, information technologist) Directorate: Associate Director, Associate Medical Director,

Campamento Diabetes Safari Structures for containment n n Physical Administrative Clinical and technological Political

Campamento Diabetes Safari Global structural design Staff's primary task: to provide opportunities for learning, through practical experience, about functional self-management of DM 1 by working in the here-and-now with all issues verbally or nonverbally expressed by Campers If Staff members do not learn, neither will Campers' primary task: to learn through experience about the practical self-management of blood glucose levels in the presence of DM 1 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)

Campamento Diabetes Safari Global structural design Staff commitment to self-directive model of education Opportunities for self-directed learning about DM 1 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. "

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 DM 1 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?

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, or the physician alone can regulate control of BG How to interpret / understand this photo in a group relations framework? mother, and should

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

Campamento Diabetes Safari Global structural design Management and self-management (in role, in DM 1) interrelated Campers are deemed responsible for and knowledgeable in their own DM 1 self-management Development of capacity for responsibility for one's own destiny and quality of life Provide opportunities for children and adolescents with DM 1 to take up protagonist role in management of the condition

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 DM 1 decides not to employ the corrective treatment possible, indicated, or offered The person with DM 1 can accept or reject the self-management option, a decision shaped by articulated and unconscious goals and processes The Camper with DM 1 possesses the authority, liberty, and responsibility for choosing if, when, and how she or he employs the educational opportunities provided

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 DM 1, food choices, physical feelings, measurements, BG etc. )

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 DM 1. ”) my destiny depends on my efforts (“I am learning how to take care of my DM 1. ”) management depends upon the physician or certified diabetes educator (“I put everything in your hands, Doctor. ”)

Campamento Diabetes Safari Output evaluation Significant parental satisfaction with Campers' expanded DM 1 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/d. L and 87 mg/d. L (P <. 0025). Mean 3 -day BG (95 mg/d. L) confirmed stable euglycemia. From: Methods for achieving stable normoglycemia during an educational camp for youth with type 1 diabetes mellitus: www. continents. com/diabetes 34. htm

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