Transitions in Care: Meeting the Challenges of Type 1 Diabetes in Young Adults

By Howard A. Wolpert, Barbara J. Anderson and Michael A. Harris

Providing care for a young adult with type 1 diabetes during this stage can be difficult as well. Transitions in Care serves as a coaching manual for health care providers and parents, and as a guide to self-care and independence for young adults with diabetes. It demystifies a complicated period in a life with type 1 diabetes and makes the passage to adulthood easier for everyone involved.

• Language: English
• Publisher: American Diabetes Association
• Release date: May 18, 2009
• ISBN: 9781580403641

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One

The Challenges of Young Adulthood

DEVELOPMENTAL ISSUES IN THE YOUNG ADULT (EMERGING ADULTHOOD)

Over the past century, traditional developmental psychology theorists such as Erik Erikson (1950, 1968) defined the time immediately after adolescence as the young adult period. In contrast, J. J. Arnett (2000, 2004), a leading contemporary developmental theorist, argued that young adulthood does not begin until youths are in their late 20s or 30s and that the developmental stage between approximately 18 and 25 years defines a period called emerging adulthood. Recent cultural trends in America for young people in their 20s lead them to delay assuming adult roles with respect to marriage, parenting, and work. Arnett suggests that today’s young people should:

…explore the possibilities available to them in love and work, and move gradually toward making enduring choices…. This period is a time of high hopes and big dreams. However, it is also a time of anxiety and uncertainty, because the lives of young people are so unsettled, and many of them have no idea where their explorations will lead. They struggle with uncertainty even as they revel in being freer than they ever were in childhood or ever will be once they take on the full weight of adult responsibilities. To be a young American today is to experience both excitement and uncertainty, wide-open possibility and confusion, new freedoms, and new fears. (Arnett 2004)

Furthermore, in contrast to the views of traditional developmental psychology, more recent developmental theorists subdivide the young adult or post-adolescent period into two phases: an early phase corresponding to the years after high school (∼18–22 years of age) and a later phase when more traditional adult roles are assumed (∼23–30 years of age). This age division is somewhat arbitrary and may not apply to all individuals, and not all individuals or cultures progress through the young adult period according to these two phases. However, thinking about young adulthood as consisting of two phases provides a valuable framework when considering diabetes management and may help to ensure that the clinician’s approach and focus is appropriately matched to the young adult’s life circumstances and readiness to become an active participant in his or her own diabetes management.

THE FIRST PHASE OF THE YOUNG ADULT PERIOD

Levinson et al. (1978) and Arnett (2004) theorized that, in the U.S., there is frequently a misfit between the developmental tasks of young adults just after high school and the expectations of the various institutions responsible for young adults. Arnett studied individuals between the ages of 18 and 24 years and asked them what attributes made someone an adult. Four specific achievements were cited: 1) the ability to accept responsibility for oneself, 2) the ability to make independent decisions, 3) the ability to become financially independent, and 4) the ability to independently form one’s own beliefs and values. Interestingly, most of the young adults interviewed did not believe that they had achieved these goals. In fact, the majority of young people in the U.S. do not believe that they have achieved these goals until they are in their late 20s.

Several dilemmas confront patients in the first phase of the young adult period. This phase brings desire for independence, yet also fear of independence. Freedom from parental supervision and rules also brings responsibilities than can be quite daunting. The young adult begins to face issues such as, how do you find/keep a place to live, pay your bills, balance a checkbook, manage credit, begin a relationship/keep a relationship that might be forever, and choose a career? While young adults are trying to balance all of these new freedoms and responsibilities, they are probably doing this with less help from their parents and less structure in their daily routine. In addition, if young adults have moved away from their hometown, they are making these decisions in a place where few people know them, often removed from their closest friends. Arnett suggests that individuals in this first phase are beginning to explore the possibilities available to them in love and work and move gradually toward making enduring choices. He suggests these actions might lead them to feel unsettled, since they do not yet know where these explorations will lead them.

Similarly, the young adult’s family faces several dilemmas as the family begins to address issues such as the following:

Whether the young adult and his or her parents tolerate the separation and increasing independence and still remain connected.

Whether the parents become over-involved or cut off relationships prematurely.

How young adults cope with the potential of remaining dependent on their parents for both tangible (e.g., monetary, housing) and emotional support as they develop their skills and identities as either students or workers.

How the possibility of financial dependence affects the relationship between the young adult and his or her parents and the parents’ ability to treat their older children as adults with separate, independent lives.

How parents cope with the difficult transition from a hands-on role in the care of their child to being a consultant. Similarly, the shift from speaking directly to their child’s physician or nurse to now relying on secondhand (if any) information is a transition that raises most parents’ anxiety and concern.

To place the dilemmas young adults and their families face in perspective, the data from the 2000 Census tell us that 56% of men and 43% of women between the ages of 18 and 24 years still live at home with their parents. Moreover, 30% of men and 35% of women in that age-group live with roommates. In fact, only 4% of individuals in this age-group live alone. Therefore, the assumption that individuals in this age-group are independent may be false, both from a theoretical perspective on adult development and also from a fact-based perspective regarding where and with whom they live.

During the early phase of young adulthood, which Levinson et al. (1978) called the early adult transition, the person may be transitioning geographically, economically, and emotionally away from the parental home. Furthermore, if the 18- to 22-year-old young adult has also transitioned to a college or trade school, his or her new life will be marked by added changes, distractions, and demands. For most young adults, these competing educational, economic, and social priorities detract from a focused commitment to chronic disease management. Even though young adults are facing these competing demands, most do not believe that they have achieved all of the skills necessary to remain independent and accept these responsibilities on their own. Therefore, it may be unrealistic to expect young adults with diabetes in this first phase of young adulthood to intensify their glycemic control, to learn pump therapy, or even to transition to a new adult diabetes provider. Furthermore, for most patients, this early phase is often marked by feelings of invulnerability and a tendency to reject perceptions of adult control, and this further limits receptiveness to change.

Lessons from Psychosocial Research in Youth with Type 1 Diabetes After Adolescence

Emerging adults with diabetes face even more complicated decisions than their healthy peers. The daily demands of diabetes care (which include the need to coordinate daily care, finding appropriate care providers, and the daunting task of access to appropriate supplies and medical care) must be woven into all of the normative choices regarding relationships, occupations, living arrangements, and financial management. The following review of empirical behavioral studies of post-adolescent youth with type 1 diabetes illustrates two ideas central to this discussion: 1) the developmental period after high school represents a distinct period with unique demands separate from adolescence and 2) for a subgroup of young adults, there is continuity between the diabetes-specific adherence and control problems they experienced as adolescents and the ongoing adherence behavior and glycemic control struggles they face over the post-adolescent years. The earliest psychosocial studies of post-adolescent youth (18- to 25-year-old individuals) with type 1 diabetes suggested that these individuals experienced a delay in psychosocial maturation (Jacobson et al. 1982, Kokkonen et al. 1997, Robinson et al. 1989, Kokkonen et al. 1994, Myers 1997). It is important to remember that the majority of patients on whom these empirical studies were based experienced their childhood and adolescent years with diabetes during the period before the Diabetes Control and Complications Trial (DCCT) (i.e., before the era of intensive management of type 1 diabetes with the added burden of a more complex treatment regimen that allows for more lifestyle flexibility).

More recent empirical studies, carried out in the post-DCCT era, have reported findings that contradict these earlier reports of delayed psychosocial maturation in post-adolescent youth with type 1 diabetes. Pacaud et al. (2007) in Canada studied the psychosocial maturation of individuals 18–25 years of age with type 1 diabetes and age-matched control subjects who did not have diabetes. The mean age of respondents in both groups was 22 years of age. The authors concluded that the youth with type 1 diabetes did not differ from healthy peers in terms of psychosocial maturation. Interestingly, there was a tendency for respondents in both groups to score lower than the norms on indexes of responsibility and independence. This study supports Arnett’s theory that it is not until their late 20s that many youth in today’s world begin to assume traditionally more adult roles (Arnett 2004). Similarly, Gillibrand and Stevenson (2006) recently studied young people 16–25 years old with type 1 diabetes living in the U.K. and also found that emerging adults with diabetes have normal levels of psychosocial maturation. Of great importance, and a theme that is woven throughout this book, Gillibrand and Stevenson (2006) also found that a high level of family support during this key developmental phase was the strongest predictor of the young adult’s adherence to the diabetes regimen.

Whereas the cross-sectional studies of Pacaud et al. (2007) and Gillibrand and Stevenson (2006) documented normal psychosocial maturation for young adults with type 1 diabetes, the longitudinal cohort research of Bryden and colleagues in the U.K. identified a subgroup of young adults with disordered eating (insulin misuse for weight management), especially in female adolescents with type 1 diabetes. This disordered eating was strongly related to the development of microvascular complications and mortality among the young adult females in this cohort (Bryden et al. 1999, Peveler et al. 2005). This 8-year follow-up study of a cohort of adolescents with diabetes found that behavioral problems during the adolescent years predicted poorer glycemic control in young adulthood and a significant increase in serious microvascular complications. During the follow-up evaluation of these individuals, 54% of the young adult females were overweight (BMI >25.0 kg/m²), up from 21% at baseline. This weight gain can be an important factor contributing to poor ongoing diabetes self-management and adherence. Over 35% of adolescents and young adult females with type 1 diabetes