significantly amplified in children and adolescents because they lack the maturity
... TREATMENT PLAN: Initiating a comprehensive treatment plan can be time ...
Children and Adolescents Afflicted With Chronic Illnesses Diabetes Self-Management Education (DSME) Model Coping with a chronic illness such as diabetes can be very challenging for adults. This challenge is significantly amplified in children and adolescents because they lack the maturity necessary to understand and accept responsibility for their illness. Dire warnings about the consequences of neglecting their illness go unheeded. Resentment over limitations in their freedoms results in oppositional and defiant behavior. Parents and guardians are frequently frustrated with the child’s refusal to cooperate with even simple protocols. Accepting responsibility for a chronic illness is a process that takes time. The role of the health care provider is to gradually improve the patient and parent/guardian’s understanding of the illness and work with them to increase mastery of their condition. Foremost there must be a commitment by the care provider and parent/guardian to stay with treatment and continue to push for progress in the face of continued opposition from the child. TREATMENT PLAN: Initiating a comprehensive treatment plan can be time consuming and may involve multiple specialists in addition to the primary care physician. The process starts with a comprehensive assessment of the patient’s physical, psychological, developmental and social situation. The patient and parent/guardian’s current understanding of the illness must be determined. Barriers to understanding (i.e. language and culture) must be assessed. Specific resistances to accepting the illness should be defined. These assessments should lead to a treatment plan that defines the medical, psychological and social interventions that need to occur along with an educational and behavioral program that will systematically move the patient and parent/guardians to greater acceptance and responsibility for the condition. EDUCATION: A full understanding of a chronic illness takes time. Complicated issues may be hard to grasp for many people. Understanding diabetes involves recognizing the importance of diet, exercise, glucose monitoring, medications, reducing risks, monitoring and attending to acute complications (e.g. ketoacidosis) as well as chronic complications. Although understanding glucose metabolism is helpful to appreciating the necessity of various interventions, this may be beyond the ability of many to comprehend. Because many people are overwhelmed with the complexity of the situation, education should be done in phases. Basic concepts should be taught and reinforced. Only after the basics have been mastered can one move on to other concerns. TEAM TREATMENT: No single provider can meet all of the needs of a child with a chronic illness. Depending on the initial assessment children and parent/guardians may need support from social services, behavioral specialists and the school system as well as medical professionals. Frequent office visits with the primary care physician coupled with in-home medical, social and behavioral services are to be expected. Every member of the team should understand their role in the overall treatment and communicate frequently when problems arise.
BEHAVIORAL INTERVENTIONS: Once obstacles to acceptance have been defined, specific behavioral interventions need to be developed. Talking to a child about the consequences of treatment noncompliance is frequently ineffective. Children respond much better to behavioral reinforcement where specific achievements (e.g. regular monitoring and recording of blood glucose for diabetics) are continuously rewarded. This contrasts with a punitive system to address maladaptive behaviors which seldom works. There should be frequent systematic monitoring of behaviors. Achievable goals for healthy living (e.g. diet and exercise) should be established. Success with achieving these goals should be regularly monitored and rewarded when achieved. If a child consistently fails to meet expectations then the goals should be modified. KEY COMPONENTS OF SUCCESSFUL TREATMENT Long term commitment to the child by the primary care physician, the behavioral health specialist, social services and the parent/guardian: o Because these situations are extremely stressful there has to be a commitment by providers and parents/guardians to stick with the adolescent for the duration. In particular, adolescents living in foster care need the assurance that they will not be abandoned when their physical or emotional problems are at their worst. A comprehensive treatment plan focusing on education and coping skills that recognizes significant change does not occur rapidly and regression is normal: o Adolescents are subject to continuing external (e.g. peers) and internal (i.e. developmental) pressures that affect their ability to progress in treatment. Therefore any treatment plan must be flexible and accommodating to the child’s ongoing needs. Mobilization of community resources to support the parents/guardian: o Parents, particularly foster parents, can be easily overwhelmed at the prospect of dealing with medical and/or emotional problems. There are legitimate fears that the adolescent could suffer a severe medical complication (e.g. hypoglycemia or ketoacidosis) or make a significant suicide attempt. To assist with these anxieties community support needs to be available during periods of crisis with ongoing positive reinforcement for the parent/guardian’s willingness to continue. Intervention strategies to manage crises o Crises will occur, frequently at the most inopportune time. Providers with experience should identify possible crisis situations that may arise. They should develop written intervention plans including where to go and who to call so the parent/guardian has the security of knowing they are not alone. It is imperative that identified resources for the parents/guardians be immediately available at all times. The ability to provide in home services as needed o Home visits by trained professionals can easily make the difference between success and failure. Without this key element of treatment, a minor crisis can escalate to an unnecessary, prolonged emergency room visit further stressing the adolescent and parent/guardian potentially leading to a collapse of the family unit.
Assuming responsibility for a child with a chronic illness can be a daunting and frustrating task. Progress can be slow accompanied by periodic regression. However with commitment and consistent efforts to improve understanding and facilitate self management these children can be spared the devastating consequences of their condition. References: Haas L, Maryniuk M, et al. National standards for diabetes self=management education and support. Diabetes Educ 2012; 38:619 Anderson R, Funnell M, et all. 101 tips for behavior change in diabetes education. American Diabetes Association, Alexandria, VA 2003 Glazier RH, Bajcar J, et al. A systematic review of interventions to improve diabetes care in socially disadvantaged populations. Diabetes Care 2006; 29:1675 Zgibor JC, Peyrot M, et al. Using the American Association of Diabetes Educators Outcomes Systems to identify patient behavior change goals and diabetes educator responses. Diabetes Educ 2007; 33:839.
