Volume 13 Number 2, 2000, Page 88
Balancing Developmental Needs and Intensive Management in AdolescentsJill Weissberg-Benchell, PhD, CDE, and Jeanne E. Antisdel, MA
Most people think about adolescence negatively, emphasizing the problematic behavior and attitudes that are sometimes present during this period of development. Adolescence, however, can also be a wonderful and exciting time of growth and development. Adolescents are learning and refining a myriad of new skills. Cognitively, they are beginning to become skilled problem-solvers. They show increasing flexibility in their thinking, and they create and test new theories of how their world works. They are able to imagine and plan for the future (although some may argue that adolescents do not always make use of this skill). They are capable of predicting the consequences of their actions and employing logic to solve a problem.
As they hone the skills necessary for thinking about their own thoughts, they also become increasingly self-conscious and concerned about how others perceive them. These new-found skills also allow them to become keenly aware of inconsistencies and hypocrisy in their world, and they begin to become expert at using these skills to argue and to test limits.
Emotionally, adolescence has often been thought of as a time of turmoil, characterized by erratic and intense mood swings. Adolescents learn to regulate their emotions as they move through their world. They can exhibit extraordinary elation and enthusiasm, as well as intense feelings of self-doubt and sadness. Their increasing introspection can, by its very nature, sometimes lead to depression-inducing thoughts and beliefs.
Socially, adolescents increasingly explore the world outside their family boundaries (roles and rules). Often, they deliberately reject the values and traditions of their own families, and their peer group becomes increasingly central in their lives. They turn to their peers as sources of support, validation, and self-worth. They also become increasingly aware of their own sexuality. Increasing sexual maturity leads to exploration and renegotiation of relationships with peers, as well as exploration with physical and emotional intimacy.
During this phase of the family life cycle, family members begin to reorganize, renegotiate, and redefine their roles and relationships. Family boundaries need to become more flexible and allow for teenagers' increasing independence.1 This flexibility, if successful, allows teenagers to rely on their parents and be dependent when necessary, but also to separate and spend larger amounts of time in activities independent from their family.
All of the above-mentioned changes are a part of the experience of every family with an adolescent. The adolescent's move toward autonomy and independence routinely increases the amount of conflict within the family. For example, Montemayor and Hanson2 found that families with adolescent children experience nearly five conflicts per week, mostly surrounding daily tasks such as household chores, homework, and clothing. If the family manages these conflicts flexibly and successfully, the conflicts will not escalate into serious problems.
The presence in the family of a disease such as diabetes, however, can heighten the stresses and conflicts associated with normal developmental processes, both within the teenager and within the family. For not only is diabetes a chronic illness, but its effective management also requires daily tasks that inevitably place a strain on the family system.
Living with diabetes increases the risk of conflict in the family for two reasons. First, teens with diabetes must complete more required tasks each day than do their same-aged peers. The greater the number of demands, the greater the possibility of conflict around one of those tasks. Second, the health risks of poor adherence to the daily diabetes regimen can increase parental anxiety. The more parents worry, the more intrusive they become (usually manifested as nagging), the more strained open communication becomes, and the more conflict occurs.
Adolescence is a time when there is an increasing push for independence, a potential increase in family conflict, and a decrease in family communication. The applicability of intensive insulin management (with its concomitant increased daily demands) to teenagers must be placed within this developmental context.
Since the release of the Diabetes Control and Complications trial (DCCT),3 expectations around gly-cemic control have changed dramatically, with "reasonable" HbA1c goals of ~7.2% and optimal HbA1c goals "as close to the normal range as safely possible" (DCCT, 1993, p. 983). Results from the DCCT also highlighted the importance of optimizing adolescent glycemic control.4 The teenage participants in this study required the most intense staff support and time, and yet even that support was not enough to help adolescents attain normoglycemia. Although intensively treated adolescents showed lowered HbA1c levels than their conventionally treated peers, they still displayed significantly higher HbA1c levels compared to intensively treated adults (8.06% vs. 7.12%).
Of note, the adolescent sample was primarily composed of older adolescents and young adults throughout the majority of follow-up, and the average IQ of participants was one standard deviation above the mean. Therefore, the generalizability of the DCCT findings to adolescents is questionable, and the results for many adolescents may be even less optimistic.
The significant risks associated with intensive treatment must be carefully considered before intensive treatment is initiated with an adolescent. For example, 82% of the intensively treated patients in the DCCT experienced at least one episode of severe hypoglycemia, a two- to fourfold greater risk than that of conventionally treated patients.3,4 The increased risk of severe hypoglycemia is particularly important for adolescents given their already increased risks when driving automobiles and the increasingly large amount of time spent away from adult supervision. Moreover, severe hypoglycemia can be extremely embarrassing, even devastating, to an adolescent who is trying to "fit in" and appear "normal." It can disrupt social activities with friends and dating. It also forces teens to depend on someone else at a time in their lives when independence is their goal.
The risk of weight gain must also be carefully considered when presenting intensive treatment to adolescents, because they have a twofold greater risk of becoming overweight with intensive treatment than with conventional treatment.4 As mentioned previously, self-consciousness, introspection, and the desire to "fit in" are hallmarks of adolescence. Increased weight can, therefore, be devastating to a teenager, and can lead to an increased risk of omitting insulin as a method of weight control. In fact, between 15% and 39% of young women with diabetes manipulate their insulin in order to control their weight, even when they do not suffer from a diagnosable eating disorder.5-8
The risks of intensive insulin treatment are certainly noteworthy and may pose considerable barriers for an adolescent's willingness to adopt such a treatment program. Thompson and colleagues9 interviewed patients about their willingness to intensify their treatment after providing them with the results of the DCCT. Of the 550 patients between the ages of 15 and 60 years who participated, 40% indicated that they were not prepared to adopt an intensive approach. The most common reasons for declining intensive therapy were concerns about more frequent and severe hypoglycemia, loss of a driver's license, frequency of blood glucose monitoring, and weight gain. Furthermore, of the 60% of patients who were willing to intensify treatment, only 37% percent were willing to take at least three injections per day, and only 30% were willing to attend clinic appointments every 3 months.
Similarly, Tercyak and colleagues10 asked adolescents to participate in a randomized study comparing intensive treatment with conventional treatment. Forty-three out of 99 teens refused to participate in the study in spite of being provided with the DCCT results. Teens refusing to participate were interviewed to learn more about their decision. The most common reasons for refusal were increased frequency of clinic appointments, increased number of injections per day, increased monitoring of blood glucose, and transportation difficulties. Bougners and colleagues11 randomized 205 patients with diabetes between the ages of 7 and 15 years (previously treated with a two-injection/day regimen), with either a two-shot or a more intensive three-shot/day regimen. While the majority of adolescents accepted their group assignment, those who refused assignment to the more intensive treatment protocol cited such reasons as preferring the two-injection regimen, believing control is better with two injections, and concerns about the added constraints an intensive program would impose.
Intensive treatment requires more frequent injections, blood glucose checks, and complex adjustments of insulin dosage in relation to blood glucose levels and carbohydrate intake. Although it requires the ability to make use of blood glucose numbers to accurately adjust carbohydrates, insulin, and activity levels, few families utilize this information. Wysocki and colleagues12 assessed the use of blood glucose data by families of teens with diabetes over a 1-month period. While the families recorded a mean of nearly five checks per day, the information gathered was primarily used to treat hypoglycemia (reactive) rather than used in a proactive or anticipatory manner to make adjustments in insulin, food, or activity.
Intensive treatment requires anticipatory and proactive planning. Therefore, before initiating intensive treatment, families need to learn how to better use blood glucose data to help them make the necessary regimen adjustments.
Clearly, one must evaluate an adolescent's willingness to adopt an intensive treatment program before offering such a regimen. One must also carefully discuss the potential risks of adopting an intensive treatment regimen with adolescents. However, one cannot become overwhelmed by these risks and ignore the long-term health benefits of intensive management. The challenge, then, becomes how to improve adolescent health while decreasing the barriers to adopting this program as well as decreasing the individual and family impact of the increased daily demands.
Among the barriers to successful implementation of intensive therapy with adolescents is the high risk of poor adherence to this intrusive self-care regimen. In a confidential survey of 144 adolescents, most of whom were receiving conventional treatment, 25% admitted to missing insulin injections and 29% made up blood test results because the real ones were too high.13 Of note, these results were obtained for the 10-day period before a diabetes clinic appointment and therefore may underestimate nonadherence among adolescents with diabetes.
Within the context of an adolescent's developmentally appropriate push for independence, teens with diabetes also often seek increased independence for managing their diabetes regimen. This increased independence may lead to increased nonadherence. In fact, a large body of literature14-18 suggests that parental involvement in the diabetes regimen significantly decreases in adolescence and that poor adherence to the regimen is a common consequence of that decreased supervision.
Although parents may believe that their teens are adhering to their regimen, making appropriate adjustments in their insulin dosage, and choosing foods wisely, the teens' and parents' views about what constitutes sufficient adherence may differ. In their seminal study, Anderson and associates14 examined family sharing of diabetes management responsibilities among 121 adolescents and their mothers. Results indicated substantial differences between adolescent and parental perceptions of responsibilities for diabetes management tasks, with 84% of families acknowledging "no one taking responsibility" for at least one task and 24% of families indicating this pattern for four or more tasks. It is likely that a number of tasks went undone because no one claimed responsibility for ensuring their completion. These results indicate the need for increased communication between parents and teens at a time in the family life cycle when communication between teens and parents is often difficult.
Clearly, independent responsibility for the diabetes regimen cannot be granted merely because a teenager has achieved a particular number of birthdays. Inappropriate transfer of self-care responsibility can precipitate poor glycemic control and increase conflict between parents and children. The transfer of self-care responsibilities from parents to adolescents needs to occur gradually, with a key focus on how and when. Negotiating this transfer must include consideration of such factors as the child's level of diabetes knowledge, degree of cognitive and emotional development, ability to perform self-care tasks, locus of control, and family environment.18,19 While children at certain chronological ages may have the necessary mechanical skills or knowledge to perform these tasks, there is wide variability in development, and not all children of a given age can emotionally handle these responsibilities.
Wysocki and colleagues18 assessed diabetes self-care autonomy among 100 children and adolescents with diabetes. Determinations regarding developmentally appropriate levels of self-care were based on relationships between level of self-care and psychological maturity (composite measures of cognitive function, social-cognitive development, and academic achievement). Results indicated that excessive self-care autonomy of diabetes management tasks was associated with adverse outcomes, including poorer treatment adherence, greater diabetes-related hospitalizations, and, to an extent, poorer glycemic control among adolescents with diabetes. Similarly, Anderson and colleagues20 found that greater parental involvement in blood glucose monitoring was significantly related to improved adherence for this task. Furthermore, increased frequency of blood glucose monitoring predicted improvement in HbA1c.
Given these findings, it is now believed that the transfer of responsibility for diabetes management tasks from parents to young adults needs to occur gradually and requires continued parental involvement throughout the process. However, misperceptions about the intent of parental involvement in the diabetes regimen can often lead to increased family conflict. Coyne and associates21 coined the term "miscarried helping" to describe this phenomenon.
According to this theoretical model, parental attempts at improving their child's health status (perhaps through improved adherence), will paradoxically result in poor adherence. The intense desire to be helpful may eventually result in parental attempts at coercive control. Teenagers resist this coercion by frustrating their parents and refusing to engage in the behavior their parents are suggesting. The result is increased conflict and compromised health outcomes.22
These negative interactions are rarely caused by a parent's malicious intent, but rather come from their genuine love and concern for the health of their child. However, in this context, parental involvement in the diabetes regimen can often be perceived by adolescents as intrusive and nagging. For example, if a parent or other family member responds to an adolescent's out-of-range blood glucose with statements such at "What did you eat?" or "You cheated again, didn't you?", it is likely that the adolescent heard the parent's concern as criticism. The next time the adolescent has an out-of-range blood glucose level, he or she will probably not show the parent the accurate results.
Although falsified results can lead to errors in treatment decisions and worsening blood glucose control, children have a desire to please their parents and avoid negative consequences (as we all do). When viewed within the context of miscarried helping, it is not surprising that teens may not always be honest about their regimen behaviors or glucose results.
Research aimed at preventing miscarried helping and improving communication between parents and teenagers has been promising. Anderson and colleagues23 demonstrated the effectiveness of an office-based intervention focusing on teamwork between teens and their families. Families receiving the teamwork intervention were trained to negotiate an individualized plan for sharing responsibility for management tasks. This intervention proved effective in preventing the decreased parental involvement in blood glucose monitoring and insulin administration commonly observed in families of adolescents. Furthermore, families receiving the teamwork intervention reported significantly less conflict around diabetes management tasks than did families in the control group, indicating that greater parental involvement does not inevitably lead to greater family conflict. Maintaining parental involvement in these tasks may help to prevent the deterioration in glycemic control often seen in puberty.24
If "miscarried helping" can be minimized or avoided, parental involvement in management tasks is often viewed positively by adolescents. La Greca and colleagues25 interviewed 74 adolescents with diabetes about their perceptions of the diabetes-related support they receive from family and friends. Teens reported that family members provide tangible support around insulin administration and monitoring blood glucose levels,while friends provide more emotional support. Higher levels of family support were significantly related to better adherence. In spite of increasing autonomy in other areas, when done appropriately, teens view continued parental involvement in diabetes tasks as helpful and supportive. Clearly, it is possible for continued family involvement in diabetes care tasks without increasing negative family interactions.
In sum, the possibility of successful intensive management in teens can be increased by offering interventions aimed at improved family teamwork and the development of a plan for gradual transition of regimen responsibility. This will not only decrease family conflict around the diabetes regimen, but it will also decrease the risk of poor adherence to the demanding regimen.
The demands of intensive treatment can intrude into other important areas of an adolescent's life such as school, sports, friendships, and dating. Teens who perceived their diabetes as having a significant impact on their lives were less satisfied, felt that management was more difficult, and felt that diabetes was more upsetting.26
Teenagers may be particularly sensitive to the impact of diabetes on their social lives. In fact, in a study that asked teens to respond to hypothetical social situations, adolescents indicated they would be less adherent to their diabetes treatment regimen in social situations than they would be at home.27 The impact of intensive treatment in teens clearly must be considered within the context of their social lives (e.g., lunch, work, athletics, time with friends), and the possibility of nonadherence during social situations should be considered when setting treatment goals.
Recognizing the importance of problem-solving skills in improved treatment adherence, Grey and colleagues28 evaluated the efficacy of a coping skills training program. Adolescents were provided training in problem-solving skills, social skills, and conflict resolution. Teens participating in this program experienced an increased sense of mastery and competence with their diabetes care and had lower HbA1c levels than did the controls.
Feeling different from your friends can be a source of stress. It is often believed that poor adherence to the diabetes regimen is a result of conflict between the demands of the diabetes regimen and the demands of spending time with friends. However, when Weissberg-Benchell and her col-leagues13 asked teenagers to list the reasons for missing insulin shots or blood glucose checks, only 35% offered not wanting to complete tasks in front of their peers as reasons for poor adherence. It is also often believed that as teenagers reject the values and traditions of their own families and become more involved in their peer group, they increasingly move toward risk-taking behaviors, such as drug and alcohol use. However, teenagers with diabetes appear to be less likely to engage in these behaviors than are their same-aged peers.29
Peer supports can play an important role in how well adolescents cope with diabetes, because peers' opinions become increasingly vital to adolescents' self-concept. The literature on peer supports suggests that teens find their friends very helpful in managing the emotional burden of living with diabetes. As noted earlier, in a survey of adolescents with diabetes, LaGreca and colleagues25 found that peers provided greater emotional support than did family members. Friends were better than family members in helping teens feel good about their diabetes. Because friends are viewed by teens as their main providers of emotional support, their influence should not be overlooked. Teens who have few friends or who do not feel comfortable disclosing their diabetes may miss out on a vital opportunity for positive support in living with diabetes.
In sum, it is vital to talk with teenagers about their beliefs regarding the potential impact of intensive insulin regimens on their social lives. Posing hypothetical social situations and helping teens think through how they would handle those situations will be an important strategy for preventing nonadherence caused by social embarrassment. Nevertheless, the literature on peer support does suggest that peers play a supportive, rather than a detrimental role in adolescent adaptation to and coping with diabetes.
Strong family and peer supports may be necessary but are not sufficient for facilitating an adolescent's decision to adopt an intensive treatment regimen. The efficacy of an adolescent's coping strategies also plays an important role in determining the potential success of an intensive treatment program. How teenagers cope with stress plays a crucial role in their overall psychosocial adjustment and metabolic control. Children and adolescents exhibiting poor psychosocial adjustment to their diabetes and poor metabolic control are more likely to cope by ventilating feelings, avoiding problems via substance use or staying away from home, or using wishful thinking.30,31
Similarly, Reid and colleagues32 found that teenagers who adhere to their regimen tend to cope with their diabetes by actively seeking social support and using problem-solving techniques. In contrast, those teens who had difficulty adhering to the regimen tended to cope with their diabetes by avoiding thinking about their disease or by blaming others for their difficulties.
When discussing the option of an intensive regimen with teens, it may be helpful to evaluate their typical styles and strategies for coping with stress. Those teens who tend to avoid their problems, blame others, or adopt a passive approach to problem-solving may not be ready for the demands of intensive treatment.
In addition to careful consideration of an adolescent's family supports, peer supports, and coping styles, careful consideration of the immediate daily impact of intensive treatment must also be reviewed. If adolescents are to agree to adopt an intensive program, it must be personally relevant and meaningful to them. Health care practitioners can be helpful by focusing discussions on the here and now and on current benefits, such as increased flexibility in scheduling and eating. Discussions of the future and of the long-term benefits of improved control should not be a focus of the conversation.
Health care practitioners can also facilitate decisions about adopting an intensive regimen by thoroughly explaining the potential costs and benefits of such a regimen. While intensive therapy entails many benefits, it also presents several risks. Individualized discussions with teens about their perceived benefits and barriers to an intensified program are vital. Health care professionals can help teach adolescents how to be good consumers of health care by engaging them in meaningful and personally relevant discussions around this issue. Furthermore, this process acknowledges the adolescent's developing cognitive and problem-solving skills.
Discussions about establishing glycemic goals are also a necessary part of assessing an adolescent's readiness to adopt an intensive regimen. Diabetes care professionals must evaluate their own diabetes goals for each of their adolescent patients and openly discuss these goals in conjunction with an open discussion about the teen's and parent's goals.33 Successful attainment of any diabetes goal is contingent on goal agreement. When families and health care providers do not develop mutually agreed upon goals, patients experience poorer health outcomes.33,34
Health care providers can help adolescents become advocates for their own health care needs, a skill they will need throughout their lives. Diabetes professionals have the opportunity to lay the groundwork for an adolescent's attitudes about health care by the way in which these professionals approach their teenaged patients. If teens have positive experiences in which their voices are heard and their opinions are acknowledged, they will be more likely to continue going to doctors and seeking health care advice from knowledgeable professionals when they are adults.
Teaching teens how to advocate for their own health care needs is an important component of adolescent medicine. Helping teens figure out how to successfully manage diabetes by integrating it into their lives, instead of changing their lives to accommodate a one-size-fits-all regimen. is a vital component of the psychoeducational curriculum. Communicating the perspective that diabetes is just one part of their lives by listening to their hopes, dreams, and plans for the future is equally important.
Intensive therapy has a lot to offer in that it can allow for greater flexibility in scheduling and timing as well as help in attaining tighter glycemic control. However, helping teens set realistic goals requires active listening to their ideas about their diabetes, the difficulties they are experiencing in their management efforts, and the safety nets available to them (e.g. family, friends) when they are struggling with particular tasks.
Anderson's work with adults on patient empowerment35 is highly applicable to intensive treatment for adolescents. The three main tenets of this approach are: 1) patients are responsible for the vast majority of their own health care and, therefore, they maintain control over decision making on a daily basis; 2) health care professionals should provide ongoing support and education so that the patients can make informed choices; and 3) changes in managing diabetes are more likely to be made if those changes are made to be relevant and personally meaningful.
In support of the empowerment approach for teenagers, Woodgate36 interviewed adolescents diagnosed with either diabetes, asthma, arthritis, Crohn's disease, or ulcerative colitis regarding their perceptions of how health care providers can best care for them. Adolescents cited the following eight themes: treat me like a person, try to understand, don't treat me differently, give encouragement, don't force me, give me options, have a sense of humor, and know what you are doing.
Communicating respect for teens' control over their self-care behaviors, facilitating family and peer support, and recognizing the provider's role as advisor to health-care options can significantly reduce the risk of diabetes burnout.37 If adolescents express feelings of hopelessness and frustration around diabetes care or the belief that they are unable to achieve their goals, then they are overwhelmed or "burned out" by their current care plan.
Intensifying their regimen during such a time will likely lead to failure and increased feelings of burnout. The risk of burnout increases with intensive management because of the increased daily demands. Therefore, plans for managing burnout need to be in place before intensive management begins.
Normalizing burn-out as a common experience that crops-up at various times throughout the life of an individual with diabetes may help. In addition, it is helpful for families to develop a plan for increasing parents' responsibility for the diabetes regimen during times of adolescent burnout, with the agreement that the adolescents can assume more responsibility when they feel ready to do so.
The ultimate goal of intensive treatment is to improve health outcomes. The challenges in beginning such a program are many, and little research exists on the long-term effects of intensive treatment on psychosocial functioning. The few studies conducted in this area offer conflicting results. Guttman-Bauman and colleagues38 found a significant correlation between diabetes quality of life and HbA1c, with 22% of the variance in HbA1c accounted for by quality of life. Adolescents with better glycemic control reported better quality of life and general health. Similarly, Boland and colleagues39 found that self-efficacy, depression, and quality of life improve for adolescents treated with either multiple injections or pump therapy. However, other studies26,40 found no relationship between quality of life and glycemic control.
Of note, the above mentioned studies only looked at quality of life with a single instrument. Further investigation of the long-term psychosocial impact of intensive treatment is needed before making definitive conclusions about the efficacy of this treatment approach in adolescents.
In sum, intensive treatment is a relatively new diabetes management technique designed to improve glycemic control and prevent or delay the onset of serious micro- and macrovascular complications associated with diabetes. However, implementation of intensive treatment is complex and demanding. It requires a consistently high level of effort, sophisticated problem-solving skills, expertise in daily medical management, and numerous resources (e.g., financial resources and family, peer, and professional supports).
While the benefits of intensive therapy are clearly understood, implementation of intensive treatment on a wide-scale basis remains difficult. Currently, we lack the information necessary to predict which patient groups will be most successful using this approach. We also lack information about the long-term psychosocial costs of adhering to such a strict and demanding life-long regimen.
Nevertheless, existing research does offer some important guidelines for facilitating the success of an intensive management program with adolescents. First, health care professionals must evaluate teens' cognitive skills and ensure that they are able to make use of blood glucose data to make the necessary adjustments in insulin, carbohydrates, and exercise. We must also assess adolescents' willingness to engage in each aspect of an intensified regimen, because adherence to one part of the regimen is not predictive of adherence to another.41
It is essential to engage adolescents in frank discussions about the risks of intensive management, such as the increased risks of low blood glucose levels and weight gain. Adolescents may need guidance in weighing the costs versus the benefits as they pertain to their own lives.
Since peers are such an important aspect of their lives, helping teens think through the potential impact of intensive management on their social lives will also be necessary. They will benefit from thinking through possible social situations and strategies for handling these events. Encourage them to talk about the extent of their peer supports in caring for their diabetes. In addition, health care professionals can evaluate adolescents' typical strategies for coping with stress to determine the likelihood that they can manage the frustrations inherent in beginning an intensive program.
Facilitating discussions among all family members about sharing the responsibility for diabetes regimen demands is another important area for intervention. Helping families work as a team and helping them develop plans for the gradual transition of regimen responsibilities will increase the likelihood that an intensive management plan will be successful. Engage all members of the family in a thoughtful review of short-term and long-term goals and be sure that goal agreement is obtained before beginning an intensive program.
Finally, remember to engage in active listening that communicates respect for the whole teenager, not just his or her pancreas.
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Jill Weissberg-Benchell, PhD, CDE, is a clinical psychologist at Children's Memorial Hospital and an assistant professor at Northwestern University Medical Center in Chicago. Jeanne E. Antisdel, MA, is a doctoral candidate in the Clinical Health Psychology Program at Yeshiva University, the Graduate School of Psychology, and Albert Einstein College of Medicine. She is presently completing her pre-doctoral internship at Children's Memorial Hospital in Chicago.
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