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

Stan De Loach, Ph.D.Organizational ConsultantCertified Diabetes EducatorClinical PsychologistMéxico, Distrito Federal, México

A. K. Rice Institute for the Study of Social SystemsSecond Biennial SymposiumChicago, Illinois3 May 2008

Vital learning through experiencefor children and adolescents

who have type 1 diabetes mellitus

Learning for leadership,in the physical realm

[email protected]

Journal of Internal Medicine, 2000, 247, 301-310

± 10% of all cases of DM

Type 1 diabetes mellitus (DM1)

Worldwide incidence

2000 total: 15,000,000

2010 total: 22,000,000

2025 total: 40,000,000


Worldwide incidence

47% higher in 2010 than in 2000

Journal of Internal Medicine, 2000, 247, 301-310

Incidence of DM1 is increasing 3 – 13% per Incidence of DM1 is increasing 3 – 13% per year ...for reasons unknownyear ...for reasons unknown

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

Mortality statistics: Deaths registered in 2001. (2002). Salud pública de México, 44 (6), 565 – 581

www.salud.gob.mx/apps/htdocs/estadisticas/publicaciones/sintesis/EfectosCIE.pdf

Two main types (1 and 2) diabetes mellitus

México realities

Syndrome characterized by

permanent autoimmune destruction of pancreatic cells (insulin-producing cells)

pancreas produces inadequate insulin

hyperglycemia = levels of blood glucose (BG) > 99 milligrams / deciliter (mg/dL)

lipid, protein, and carbohydrate (CHO) metabolism is disrupted, with life-threatening consequences


What is it?

DM1

What is it?

Insufficient insulin DM1

Lack of insulin hyperglycemia

Chronic hyperglycemia diabetic

complications (nephropathy,

neuropathy,retinopathy,

cardiopathy, premature death)

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

DM1Mean age at diagnosis?

15 xii 1922

J. L. (with mother)

before using insulin

16 i 1923

J. L. after using

insulin for 32 days

3 years old

DM1Where is it?

Halle Berry – actress Gary Hall, Jr. – Olympic athleteYours truly – survivor

Educate to maintain BALANCE

Injected insulins + Physical activity + Food intake

DM1What's to do?

DM1What's to do?

Educate to maintain BALANCE

Injected insulins + Physical activity + Food intake

Goal: Normoglycemia (BG between 71 and 99 mg/dL)

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

DM1

Who will do it?

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.

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)

DM1Who 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?

Independent health care specialists

Nurse

Physician

Dietitian

?

Certified Diabetes Educator

?

?

Dentist, psychologist,

ophthalmologist

Person with DM1

This care design is typical but ineffective.

DM1Minimally effective treatment / management

paradigm

Multidisciplinary TEAM approach

DM1Current treatment and management

paradigm

Dietitian

Nurse

Physician

Certified Diabetes Educator

Person with DM1

Dentist, psychologist, ophthalmologi

st

knowing how to...

being enabled to...

wanting to...

self-manage DM1 and LEAD the team

DM1Current treatment and management

paradigm

Leader of multidisciplinary health-care team

Person with DM1, the expert

Person with DM1

knowing how to...

being enabled to...

wanting to...

self-manage one's own DM1 care

DM1

Current treatment and management paradigm

Education for leadership role

Education in self-management role

DM1The 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-managementof the condition

DM1Vital initial and primary learning tasks

Intersystem or intergroup skills?

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


Here-and-now, intrapsychic, small-system processes?

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


Understand leadership and responsibility as consequent to knowledge and experience?

Set individualized target range for BGFocus on transformation of BEHAVIORSEnsure normal physical growth of child / adolescentAdopt a prevention of complications perspective (most complications are avoided with normoglycemia)

Accept that DM1 is a condition of self-managementGrow to accept responsibility for acting as the leader of one's health-care teamAccustom and teach the child to attend to his / her own body, which no one can know betterLearn to relate unique personal physiology to numerical values, 24/7


Learning from experience?

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. Level 2.

Functionalize knowledge of distinct types of insulins, their times of initial, peak, and maximum actionTreat hyperglucemia and hypoglycemia in timely fashion, 24/7Visually examine shoes, socks, feet, at least weeklySelf-monitor BG: Interpret and apply results for food, insulin, and physical activity adjustmentDefine frequency (4 – 7 times each day) and hours for self-monitoring of BGCorrectly employ technology for self-monitoring of BGInterpret results of self-monitoring...WHAT TO DO if high, low, or within desired range


Acquaintance with role of data?

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 hyperglycemiaKnow food groups: fats, CHO, proteins AND their effects on BGSelect and apportion foods: exchange equivalents, calories, weights, measurements (visual, intuitive, or metric)

Count CHO amounts in grams and exchanges


Becoming one's own consulting caretaker / physician?

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)


Reflective events...attending to the passage of time?

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 intakeand 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


Intersystem or intergroup negotiations?

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


Libido / destrudo tensions?

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

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?

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.

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.

Campamento Diabetes SafariGlobal 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

Directorate: Director, Associate Director, Associate Medical Director

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)Associate Director (♀, 29, DM1, Registered Dietitian)Associate Medical Director (♂, 33, endocrinologist)Activities Coordinators & Monitors (♂, 27, DM1, lawyer;

♀, 28, Registered Dietitian)Chef (♂, 24, information technologist)


Structures for containment


Physical Administrative Clinical and technological Political

If Staff members do not learn, neither will Campers.


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)


Opening plenary: "Campers are at all times free to learn and at all times are responsible for what they learn."

Campamento Diabetes SafariGlobal 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)

How to interpret / understand this spontaneous pose in a group relations framework?



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 photo in a group relations framework?



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



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



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



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



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.)



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.”)

* 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


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

Stan De Loach, Ph.D.Organizational ConsultantCertified Diabetes EducatorClinical PsychologistMéxico, Distrito Federal, México

A. K. Rice Institute for the Study of Social SystemsSecond Biennial SymposiumChicago, Illinois3 May 2008

Vital learning through experiencefor children and adolescents

who have type 1 diabetes mellitus

Learning for leadership,in the physical realm

[email protected]

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

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