Nobody can make you feel inferior without your consent.
Eleanor Roosevelt The expected developmental struggles and transitions of adolescent life are complicated by the necessity of managing diabetes. The type of diabetes, as well as many other factors, has a role in determining the best approach to care. New issues may arise when adolescents with type 1 diabetes, though accustomed to living with the disease, begin to assert their independence and seek more autonomy in self-management. The onset of type 2 diabetes, how-ever, can present even more complex challenges. The nurse is in a position to advocate for both adolescents and their families in the quest to achieve optimal wellness and prepare for lifelong management of this chronic condition.
Adolescence is a time of rapid physiological, cognitive, psychological, and social change that also requires adaptation within the family system.
Physiologically, the onset of puberty is accompanied by dramatic hormonal shifts that drive the obvious physical changes, as well as the often intense and unpredictable fl uctuations in mood that characterize the teen years.
Cognitively, adolescents begin to develop new problem-solving skills, think more abstractly, and test previous assumptions about the world. They begin to develop a personal sense of morality and values and attempt to defi ne and express their identity as individuals. Although they can visualize and plan for the future, many adolescents tend to be quite present-oriented, with little consideration for long-term consequences of their behaviors.
Impulsivity and a sense of invulnerability may contribute to a willingness to take risks. Increasing importance is placed on self-image, sexuality, and peer acceptance. Family relationships are being redefi ned and boundaries renegotiated.
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What do these changes mean in terms of diabetes management? First, the physiological changes associated with adolescence lead to blood glucose fl uctuations and insulin resistance, making glycemic control in this population more diffi cult to achieve. Unfortunately, other manifestations of adolescent development can interact to further complicate matters. The desire to be spontaneous, conform to social norms, and avoid appearing different can lead some adolescents, especially younger ones, to take risks with their health (Muscari, 1998; Scheiner, Brow, & Phillips, 2000).
The normative developmental movement toward independence and individuality that contributes to parent-teen confl icts in general may be enacted in various aspects of diabetes management. Teenagers may want increased responsibility and control in managing their condition and resent the degree of dependence on parents and health care professions that is necessary to help ensure their ongoing wellness (Scheiner et al., 2000).
The response to perceived interference may be rebellion against regimented treatment protocols. As a group, adolescents are already predisposed to the development of depression and anxiety. Coping with the demands of a chronic illness such as diabetes can further tax teenagers’ emotional resources and the resources of the family as a system.
BALANCING PARENTAL INVOLVEMENT
Despite the desire for autonomy, adolescents both need and want parental involvement in their diabetes care. Studies have indicated a correlation between family confl ict, adherence problems, and poorer glucose control and improved glucose control with a team approach to parental involvement (Anderson, Bracket, Ho, & Laffel, 1999; Miller- Johnson et al., 1994). The challenge is to fi nd the line between too much involvement and too little. Many years ago, Coyne, Wortman, and Lehman (1988) used the term “ miscarried helping” for excessive parental attempts to provide care that undermined healthy adolescent development.
Attempts to coerce adolescents to comply typically result in resistance.
Other adolescents, especially those who are newly diagnosed with diabetes, might be overwhelmed and regress to earlier developmental levels. Parents who are too attentive or overprotective concerning their child’s illness can unknowingly reinforce excessively dependent behav-iors. On the other hand, parental expectations that the adolescent will assume too much responsibility too quickly also result in poor outcomes
Adolescents With Diabetes / 109 (Wysocki et al., 1996). Weissberg-Benchell and Antisdel (2000) conclud-ed that the transfer of responsibility for carrying out tasks relatconclud-ed to the management of diabetes should occur gradually, with continued parental involvement throughout the process.
Working individually with adolescents, in addition to working with them within the family setting, helps build trust and demonstrates respect for the teenager’s desire for independence. Teaching adolescents coping skills related to managing stress, setting priorities, and problem solving in potentially awkward social situations can help prepare teenagers to a ssume greater responsibility in their self-care (Scheiner et al., 2000). Successful use of such skills is reassuring to both adolescents and their parents as new roles are being negotiated.
Parents of adolescents who have been helping their child to manage their diabetes for many years may need help determining how much control to relinquish and when the adolescent is developmentally ready to assume more autonomy. It is important for the caregiver not to assume that parents will require little support or education. Coping with an adolescent is challenging for parents; coping with an adolescent with diabetes can be much more challenging. Parents of newly diagnosed adolescents will need education concerning their child’s condition and its management. This is a good opportunity for nurses to help foster an atmosphere of cooperation and closeness between parents and adolescents as they face the new situation together.
NONADHERENCE IN ADOLESCENTS WITH DIABETES Even teenagers with type 1 diabetes who are knowledgeable about their condition and have been previously compliant with treatment regimens may exhibit sudden shifts in attitude and behavior that are a cause of alarm to parents and caregivers. Responding with rigidity and confrontation is likely to be met with hostility and confl ict. Adolescents, struggling toward independence, may rebel against parents and health care providers who they perceive to be authority fi gures. However, allowing adolescents to assume full responsibility for their diabetes management too soon can be risky, too. Either response can result in nonadherence.
Rebellion is not the only contributor to adolescent nonadherence to dia-betes regimens. Because teenagers are at different points in their develop-ment of abstract thinking skills, they may genuinely not comprehend the
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long-term consequences of nonadherence. Some adolescents respond to a concern about self-concept and body image by attempting to avoid an appearance of being different from their peers.
The fi rst step toward intervening in teenage nonadherence is understanding what concerns drive the teenager’s behavior. Attempt to rule out underlying problems such as depression, eating disorders, and substance abuse that may affect motivation, cognition, mood, and actions. Depression is a common problem during adolescence. The additional stressor of coping with a chronic illness can heighten a preex-isting risk. Although eating disorders can occur at any time in life, because of adolescent preoccupation with appearance and susceptibility to media ideals, adolescence is the most frequent stage at which they develop. There is some evidence to suggest that eating disorders occur more frequently in adolescents with diabetes then in the general population (Daneman, 2002).
Other studies have indicated that between 15% and 39% of young wom-en with diabetes manipulate their insulin with a goal of weight control (Biggs, Basco, Patterson, & Raskin, 1994; Peveler, Fairburn, Boller, &
Donger, 1992; Polonsky et al., 1994). Adolescents may do this without awareness of or concern for the damage it is doing to their bodies. Bing-ing and purgBing-ing can cause dangerous fl uctuations in blood glucose. EatBing-ing disorders are associated with poorer glycemic control and with long-term complications (Affenito et al., 1997; Rydall, Rodin, Olmsted, Devenyi, &
Daneman, 1997). Vomiting after binging on food or alcohol can lead to ketoacidosis. If you suspect that an adolescent with whom you are working is depressed, abusing substances, or has an eating disorder, refer the ado-lescent for counseling. You can work collaboratively with mental health professionals to help ensure that the adolescent receives comprehensive care that addresses emotional and physiological needs.
Most often, nonadherence is a behavioral response associated with adolescent development. It is especially important to foster a trusting relationship with adolescents who have diabetes. Being empathetic to their concerns, taking time to listen, maintaining confi dentiality, providing positive reinforcement for healthy behaviors, and including them as collaborators in their treatment planning will help achieve this goal. Muscari (1998) suggests working with your adolescent client to create a formal contract. The written contract should outline the desired outcome and the interventions required to achieve it. Because adolescents live in the present, setting short-term, real-istic goals will be more effective than focusing on long-term consequences.
Adolescents With Diabetes / 111 While you must tailor your interactions and teaching to each individual’s cognitive level, avoid talking down to adolescent clients, and treat them as individuals who are capable of making healthy choices. These approaches will help counteract the tendency for adolescents to rebel in order to assert their own identity. Working collaboratively will permit a sense of control and increase your chances of gaining your adolescent client’s cooperation.
Many adolescents lead busy lives and have full schedules. If some adolescents perceive diabetes self-management to be too time-consuming or inconvenient, you can work with the clients to help incorporate their therapeutic regimens into their daily routines, making interventions less disruptive. Teenagers value fl exibility and spontaneity. Attempts to ban specifi c foods or strictly regulate activities are likely to be unsuccessful.
Instead, teach teenagers how to make reasonable food choices and adjust their medication to accommodate what they eat. It may be time to think about modifying the adolescent’s medication or consider use of a pump.
When teaching, use instructional methods that that will stimulate and hold your clients’ interest. Most teenagers are frequent and competent users of the Internet. You can direct them to Web sites where they will fi nd accurate information about their illness (see the list at the end of this chapter). Online discussion groups can be a means of both information and peer support. Parents may fi nd the Internet a valuable resource as well. Because teenagers value peer acceptance and interaction, sup-port groups and camps can provide them with a peer group who shares their health challenges. Reid, Dubow, Carey, and Dura (1994) found that teenagers who adhered to their diabetes treatment regimen tended to actively seek social support and use problem-solving techniques to cope with their illness. Check local hospitals, clinics, pediatricians’ offi ces, or newspapers to fi nd resources in your area for children with diabetes and their families. The Diabetes Education and Camping Association has a listing of camping opportunities available at http://www.diabetescamps.
org. Of note: Although many adolescents fi nd support groups and camping experiences to be normalizing, others may perceive them as emphasizing their differences. If so, avoid pushing the adolescent to participate.
A collaborative, validating approach, creativity and fl exibility in care planning, and acknowledgment of the adolescent’s need for support are strategies that can potentially decrease the problem of nonadher-ence in adolescents with diabetes. Above all, genuinely attempt to achieve an understanding of the adolescent’s perspective on his or her illness.
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What does having diabetes mean to adolescents? What do they believe about long-term consequences? How do they think having diabetes af-fects them personally and socially? What are their priorities in life?
What problems do they anticipate in managing their diabetes? Stepping into the adolescent’s world will help you, the nurse, to be viewed as a partner, rather than an adversary, in helping the adolescent to achieve optimal wellness.
REFERENCES
Affenito, S. G., Backstrand, J. R., Welch, G. W., Lammi-Keefe, C. J., Rodriguez, N. R., & Adams, C. H. (1997). Subclinical and clinical eating disorders in IDDM negatively affect metabolic control. Diabetes Care, 20, 183–184.
Anderson, B. J., Bracket, J., Ho, J., & Laffel, L. M. B. (1999). An offi ce-based intervention to maintain parent-adolescent teamwork in diabetes management: Impact on parent involvement, family confl ict, subsequent glycolic control. Diabetes Care, 22, 713–721.
Biggs, M. M., Basco, M. R., Patterson, G., & Raskin, P. (1994). Insulin withholding for weight control in women with diabetes. Diabetes Care, 17, 1186–1189.
Coyne, J., Wortman, C., & Lehman, D. (1988). The other side of support:
Emotional overinvolvement and miscarried helping. In B. Botlieb (Ed.), Social support: Formats, processes, and effects (pp. 305–333). New York: Sage.
Daneman, D. (2002). Eating disorders in adolescent girls and young women with type 1 diabetes. Diabetes Spectrum, 15, 83–105.
Miller-Johnson, S., Emery, R. E., Marvin, R. S., Clarke, W., Lovinger, R.,
& Martin, M. (1994). Parent-child relationships and the management of insulin-dependent diabetes mellitus. Journal of Consulting and Clinical Psychology, 62, 603–610.
Muscari, M. E. (1998). Rebels with a cause: When adolescents won’t follow medical advice. American Journal of Nursing, 98, 26–30.
Peveler, R. C., Fairburn, C. G., Boller, I., & Donger, D. (1992). Eating dis-orders in adolescents with IDDM: A controlled study. Diabetes Care, 15, 1356–1360.
Adolescents With Diabetes / 113 Polonsky, W. H., Anderson, B. J., Lohrer, P. A., Apente, J. E., Jacobson, A. M.,
& Cole, C. F. (1994). Insulin omission in women with IDDM. Diabetes Care, 17, 1178–1185.
Reid, G. J., Dubow, E. F., Carey, T. C., & Dura, J. R. (1994). Contribution of coping to medical adjustment and treatment responsibility among children and adolescents with diabetes. Journal of Developmental and Behavioral Pediatrics, 14, 327–335.
Rydall, A. C., Rodin, G. M., Olmsted, M. P., Devenyi, R. G., & Daneman, D.
(1997). Disordered eating behavior and microvascular complications in young women with insulin-dependent diabetes mellitus. New England Journal of Medicine, 336, 1849–1854.
Scheiner, B., Brow, S., & Phillips, M. (2000). Management strategies for the adolescent lifestyle. Diabetes Spectrum, 13, 83–88.
Weissberg-Benchell, J., & Antisdel, J. E. (2000). Balancing developmen-tal needs and intensive management in adolescents. Diabetes Spectrum, 13, 88–94.
Wysocki, T., Taylor, A., Hough, B. S., Linscheid, T. R., Yeates, K. O.,
& Naglieri, J. A. (1996). Deviation from developmentally appropriate self-care autonomy. Diabetes Care, 19, 199–125.
ONLINE RESOURCES
American Diabetes Association, http://www.diabetes.org/for-parents-and-kids/for-teens.jsp
Children with Diabetes, http://www.childrenwithdiabetes.com
Juvenile Diabetes Research Foundational International, http://www.jdrf.
org
National Diabetes Education Program, http://www.ndep.nih.gov/diabetes/
youth/youth.htm
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