By: Stan De Loach
The diagnosis of type 1 diabetes peaks at 13 to 14 years of age, but at any age it immediately requires children and adolescents to learn many complex facets of glycemic self-management. Dr. Elliot Joslin’s belief of 85 years ago, that education is not just part of the treatment of diabetes, but rather the treatment itself, still holds true.
The rhythm and curriculum of learning differ by age. A six-year-old boy wants and needs to know aspects of diabetes self-care that are distinct from those that interest a 12-year-old girl. Their speed of learning, depth of comprehension, and personal challenges are not identical. The young person’s ability to use everyday experience in treating diabetes as a basis for individualizing relevant practical education is the key to successfully avoiding immediate problems and future complications.
Each person with diabetes is unique. The treatment regimen and response to diet and insulins are individual. General didactic learning (how many grams of carbohydrate in one cup of salad) is always a valuable tool on the journey to competent diabetes self-management. But learning through personal experience leads to knowing that is more tailored and dependable (how green salad affects my blood glucose [BG] levels).
For young persons with type1 and for their parents, shared analysis of individual experience is the foundation for most consequential learning about glycemic self-management. The child’s or adolescent’s own curiosity and desires to acquire trustworthy answers to questions that arise spontaneously in the daily routines of glycemic self-management are natural expressions of healthy self-concern and will to survive. They are also powerful motivators for learning.
In México, Campamento Diabetes Safari provides educational opportunities for children and adolescents with type 1 who wish to learn to safely and confidently achieve healthy glycemic control and stability. Although the Campamento context allows departure from standard methods of teaching type 1 self-management, the fundamental tools furnished to facilitate this vital skill are resources that campers are free to use anywhere to pursue euglycemia. They include self-initiated, experience-based learning methods, a basal/bolus treatment regimen using insulin analogs with predictable action profiles, food selections with low concentrations of carbohydrate, and ad libitum physical activity and self-monitoring of BG. “Ad libitum” means in accord with campers’ individual evaluation and perception of need and utility.
The individual decides when and how often data about BG levels are useful. To favor ad libitum self-monitoring, each camper receives a new meter and an unlimited number of reactive strips to measure BG and blood ketones. On average, campers choose to check BG 7 to 14 times per day. Studies confirm that freely furnishing reagent strips, even without other clinical intervention, boosts monitoring frequency and improves glycemic control and that these positive effects show no attenuation during subsequent 12-month periods.
Annually, the four-day residential Campamento Diabetes Safari offers experiential diabetologic education to children and adolescents seven to 18 years of age. A multidisciplinary team functions as staff and aims to enable self-awareness, comprehension, competence, autonomy, and creativity in glycemic self-management. Staff members work as a single team, exercising two concurrent roles: the manager role, in order to maintain the time, task, territory, technical, and technological boundaries essential for controlling excessive anxiety, so that learning is feasible, and the consultant role, in order to permit articulation, discussion, and analysis of experiential learning.
As managers, staff coordinate the published schedule and program. As consultants or advisors, they work in the “here and now,” to open productive interchange around a solicited or evident but sometimes unstated theme or difficulty. They may explain the Laws of Small Numbers, a painless subcutaneous insulin injection technique, calculation of individualized prandial insulin doses, or the use of physical activity for near immediate glycemic adjustment. But no part of education is mandatory. Staff are available for public consultation around-the-clock and accompany campers as they delve into whatever they need and wish to learn. Implementation of ideas or strategies that result from consultations with staff always remains explicitly the campers’ decision and duty.
From the outset, both staff and campers are explicitly and fully authorized to initiate inquiry or consultation at any time, around any topic. This authorization curtails unnecessary dependence and passivity and increases consciousness of the indispensable exercise of personal authority and responsibility in the prevention of the short-term and long-term complications of diabetes mismanagement. Campers are at all times free to learn and are responsible for what they learn.
The staff’s primary educational task is to reveal or pinpoint opportunities to learn from personal experience about functional self-management of type 1 diabetes, including pertinent emotional and psychological facets. They empower campers to discover and implement proactive, personalized solutions to glycemic disequilibrium in order to effectively maintain safe, stable euglycemia and assure physiological and psychological well-being. Self-initiated inquiry frequently leads to surprise and questions about one’s “self,” especially the emotional parts.
From verbally competent children and adolescents, type 1 demands responsibility for chronic self-management as the predominant treatment approach. The quality of self-management often parallels the physical and psychological health of the “self.” Because emotional considerations impact both acceptance and administration of information and learning, their dynamics are addressed daily in small and plenary group settings. Manifest group and interpersonal dynamics and voluntary discussion of nocturnal dreams figure prominently in staff’s evaluation and care of campers’ acute emotional conflicts and needs for support.
Through self-managing their diabetes in a low-stress context with unrestricted access to professional and peer consultation, young persons increase their competence and exercise of personal authority via participation in self-initiated exploration rather than through more passive traditional didactic instruction. They learn from hands-on experience and shared reflection on that experience. There are no academic classes or formal presentations in this novel approach to diabetologic education; the children and adolescents grow through experiment, interaction, and self-discovery rather than through traditional pedagogical techniques.
The hallmark of self-directed education is that the learner, rather than the teacher or adult expert, decides whether, what, when, how, how much, and where to learn. The learner’s active participation invites the expression and exercise of choice in the pursuit of personally meaningful objectives. The campers are inspired to express their curiosity and interests and to articulate elements of the diabetologic curriculum of immediate advantage for them as unique individuals. The same educational method and aims guide campers as well as staff.
To avoid entanglement in the politics of domination and submission, at least an occasional “complication” of the diagnosis of type 1 at an early age, staff members do not impose unnecessary regimentation or restriction on the working relationship with campers, but instead encourage them to configure contexts or situations that will be maximally beneficial and applicable to their personal diabetologic education.
The staff adapts to the campers’ characteristics and preferences, accompanying them in the process of learning from daily experience and modeling inquiry and flexibility as ways of relating productively to a continuous flow of complex data (BG variability and patterns, short-term correction options, food choices, insulin pharmacokinetics and pharmacodynamics, and physical activity programming) that is par for every child and adolescent with type 1.
Staff backs the campers’ educational initiatives, so that learning may result from a continuous cycle of relevant experience and shared analysis that probes the failures and successes always inherent in experiential learning. Self-directed education fosters the individual’s experience and development of autonomy and internal locus of control, as well as the ability to form basic hypotheses and to try the mechanics of scientific investigation to make sense of complex data and experiences. Campers may have at their disposal staff’s analyses of their own relevant efforts and outcomes as persons with type 1 diabetes.
The self-directed learning model avoids excessive formality in the verbal review of experience, leaving learning to flourish through the exercise of age-appropriate personal freedom. When asked, staff detail how campers may evaluate their experience and incorporate the information gained in the competent practice of type 1 self-management. Through such requests for consultation, campers become actively and legitimately involved in constructing the architecture of their own self-care and lifestyle.
Assorted themes, differing according to the camper’s age and maturity, give content to staff’s dialogs with campers: Can musicians have type 1 diabetes? Is celery converted to sugar? Don’t proteins have calories? Why does everyone condemn eating chicken skin? What can I do when I want something sweet? Why should I rotate the finger stick site when checking my BG? Does a daily aspirin cause bruises from injections? Why are symptoms absent when my BG is 313 mg/dl? Will my younger brother also get type 1? Can I have a baby? How would a girl feel if her boyfriend had type 1 diabetes? What is depression? Will I die from diabetes?
All such concerns can be converted to “thought questions” that invite productive involvement in the process of advancing correct, thorough, personally meaningful answers. Staff engage campers as persons with diabetes and partners in healthcare, not as subordinates, passive novices, or persons of inferior status.
In the course of prior and current experience and training, campers come to know their own body’s metabolic responses to physical activity, insulins, and glucose excess or deficit better than any other person. However, valid self-learned knowledge may not have been previously solicited or articulated, impeding its favorable contribution to optimal diabetes self-care and leading young persons at times to proceed at odds with prescribed or dictated treatment. Camp participants expand recognition of their body’s frequently subtle and distinctive clues to glycemic disequilibrium.
Staff keep from comparing or coercing campers or applying psychological pressure, guilt, or shame in exploring the quality of their glycemic control. Setting an example is more to the point. Sixty percent of staff members have type 1 diabetes; their own self-care activities (BG monitoring, insulin dose calculations, injection techniques, food choices, and portions) are public, observable examples of adroit diabetes self-management. Campers assess staff’s trustworthiness and know-how by the same standard that they use to judge their own competence: BG values over time.
A study of campers’ mean arrival and departure BG values (209 mg/dl and 87 mg/dl, respectively) and mean 3-day BG (95 mg/dl) demonstrated healthy glycemic control and stability. These results are not due to staff’s interventions or superior understanding of diabetes self-management. They are due to the campers’ desire to seek out and exploit the intellectual and material resources available, including their own, in order to employ effective self-management tools and techniques and in that way to minimize hypoglycemia and hyperglycemia by maintaining daily mean BG values within a self-selected euglycemic target range, usually 71 to 99 mg/dl.
Self-directed diabetologic education focuses on appreciating how daily experiences can generate understanding of the self-management of the acute short-term complications of insulin and dietary treatments as well as the long-term complications of inadequate or haphazard self-care. The opportunities for learning and emotional support enjoyed at Campamento Diabetes Safari are intended to allow campers familiarity with known techniques for avoiding or responding to these complications in a timely and appropriately independent fashion. With security that comes from proficiency in the real-life intricacies of everyday type 1 diabetes self-management, they can choose if, how, and when to apply considered, personally effective measures to safeguard their glycemic goals.
Bernstein RK. Diabetes solution: The complete guide to achieving normal blood sugars. Boston: Little, Brown and Company, 2003.
Nyomba BL, Berard L, Murphy LJ. The cost of self-monitoring of blood glucose is an important factor limiting glycemic control in diabetic patients. Diabetes Care, 2002, 25(7):1244-1245.
Nyomba BLG, Berard L, Murphy LJ. Facilitating access to glucometer reagents increases blood glucose self-monitoring frequency and improves glycaemic control: A prospective study in insulin-treated diabetic patients. Diabetic Medicine, 2004, 21:129-135.
De Loach S. Methods for achieving stable normoglycemia during an educational camp for youth with type 1 diabetes mellitus. 2007. www.continents.com/diabetes34.htm
Stan De Loach, PhD, is a certified diabetes educator and clinical psychologist in independent practice in Distrito Federal, México