stan de loach, ph.d. organizational consultant certified diabetes educator clinical psychologist...
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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
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
Type 1 diabetes mellitus (DM1)
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
Type 1 diabetes mellitus (DM1)
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
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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)
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
DM1Vital initial and primary learning tasks
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
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)
Campamento Diabetes Safari
Structures for containment
Campamento Diabetes Safari
Physical Administrative Clinical and technological Political
If Staff members do not learn, neither will Campers.
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)
Campamento Diabetes Safari
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?
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 photo 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, mother, or the physician alone can and should regulate control of BG
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 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
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
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.)
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.”)
* 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
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
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