Participation in Occupation and Diabetes Self-Management in Emerging Adulthood

Participants

Before recruitment, approval to conduct the study was obtained from the university’s Institutional Review Board. I recruited 8 participants for the study through a support group for young adults with diabetes and through advertisements in local university newspapers and a free weekly newspaper distributed throughout the greater metropolitan area. Demographic information is detailed in Table 1. The criteria for selection were as follows: (1) ages 18–25 at commencement of interviews, (2) diagnosis of Type 1 diabetes for ≥1 yr, (3) absence of comorbid health conditions that currently affect their participation in daily activities, and (4) residence ≤50 mi of downtown Los Angeles. Items 1, 2, and 3 were determined through participant self-report. Before his or her initial interview, each participant received written and verbal information about the study and completed an informed consent.

Data Collection

I conducted a series of six semistructured interviews with each participant, averaging 45–60 min each, which took place approximately biweekly in a location of their choosing (typically their home or college campus). The focus of interviews was on developing a picture of the participants’ daily activities and routines, uncovering dilemmas related to diabetes care, personal theories about diabetes self-management, relationships with their physical and social environment, occupational histories, medical histories (including any noteworthy events such as a change in diabetes treatment regimen), and other personal and contextual factors that contributed to diabetes self-management in their everyday lives. Each participant received a $75 stipend for completion of the series of interviews. All interviews were recorded and transcribed verbatim for further analysis.

Data Analysis

A cross-case thematic analytic approach was used, aimed at extracting initial themes derived from patterns within the interview data. These themes were tested and refined on the basis of further data gathering and knowledge gained from the existing literature (DePoy & Gitlin, 2005). In generating themes, I paid attention to commonalities across participants’ experiences, as well as individual variations or disconfirming cases. Data analysis was an iterative process, with preliminary themes being identified as they emerged in interviews and increasingly refined as new data were collected. As these themes were developed, they were analyzed through a theory-driven lens as I reviewed the literature for potentially relevant concepts and a data-driven lens as I returned to the interviews to search for supporting data.

Throughout the research process, I aimed to enhance trustworthiness by using method triangulation, in comparing participants’ responses across time, and theory triangulation, in analyzing data using multiple theoretical perspectives including emerging adulthood (Arnett, 2000), social cognitive theory (Bandura, 1998), chronic disease self-management (Lorig & Holman, 2003), and studies of lifestyle redesign (Clark et al., 1997). In addition, I used peer debriefing as a strategy to explore alternative interpretations of the data to those I had developed. Finally, throughout the research process, I aimed to maximize reflexivity, purposefully examining my personal biases as they emerged. These biases were documented in field notes that I used to reflect on how they might be influencing the research process.

Emotional Reactions to Diabetes

Many participants experienced emotional distress related to diabetes caused by feelings of losing control over their lives, being different from their peers, or being unfairly targeted by the disease. As Leslie shared, “I felt so bombarded with diabetes and just that I was so different and I wasn’t able to gain control of my life. . . . I feel like it’s definitely a matter of happiness.” Participants’ emotional reactions to diabetes affected not only their mental health but also their physical health, as their feelings sometimes led them to become negligent in their diabetes care.

Participants sometimes struggled with acceptance and resented diabetes for demanding their care and attention on a daily basis for the rest of their lives. One way in which they expressed this feeling was forgetting (whether consciously or unconsciously) that they had diabetes, as Annabel described:

This strategy enabled Annabel to relieve herself temporarily of the resentment she harbored toward diabetes. However, by ignoring the disease, she put herself at significant risk for developing both acute and long-term complications.

A more extreme form of acting out was what Sadie called “going on vacation,” which entailed minimizing the effort she devoted to diabetes self-management to the greatest extent possible without inducing acute complications. Sadie, burnt out after a childhood filled with medical appointments and procedures caused by an early onset of diabetic complications, enacted this strategy as soon as she was able to make treatment decisions independently. She had been “on vacation” for >3 yr when we met, although she knew that ultimately this “vacation” was unsustainable in the long term and would put her health at significant risk. As she shared, “At this point, I make it such a small part of my life, that I can’t do this minimal amount of care forever. It wouldn’t be healthy.”

Negotiation of Unanticipated Events

Emerging adults are likely to act impulsively and take risks because of a perception of invincibility (Arnett, 2004). This attribute was evident in the study participants and on occasion would lead to a cascade of negative outcomes. Although most participants verbally expressed an understanding of the need to prepare for the unexpected, few devised such preparations until it was too late. Nina, for example, said she was “pretty much covered in that area; I don’t really think I have to worry about it.” However, she discovered her confidence was misplaced when her insulin pump failed, and she called her doctor in a panic at 2:00 a.m.

This incident, one of several that occurred during the study, illustrates participants’ perception of invincibility. This was only broken when they experienced the negative consequences of their (in)action, rather than anticipating and avoiding problems before they happened. As Leslie shared, after a similar event, “I don’t really plan for emergencies very well, I guess . . . they say always have a backup plan, and I didn’t.”

In some cases, risk taking or lack of planning resulted in serious health consequences. The instigating factor in each of these episodes was a failure to take insulin for various reasons, such as losing or forgetting supplies or being reluctant to take an injection in public. They often combined several factors, such as when Jenny went to an amusement park and postponed taking her insulin injection because she could not find a restroom. She put the syringe in her purse, planning to take a shot when she saw a restroom, but forgot until that evening, when she realized she had left her purse in her friend’s car. By the time her friend returned it the following day, Jenny was already feeling ill, and continued to get sicker over the next 2 days. The incident ended with Jenny being hospitalized for diabetic ketoacidosis.

Sadie experienced a comparable avalanche of problems resulting from her inattention to the consequences of a series of risky decisions. Taking what was supposed to be a quick trip to shop for shoes, she left her supplies at home. However, while she was shopping, her friends called and invited her to join them at the beach and then to a concert that evening. Ultimately, Sadie ended up staying out all night. Coming home the next morning, she became ill:

In this situation, Sadie’s experiment spiraled out of control when she stayed away from home much longer than she intended without any way of managing her diabetes. This episode of risk taking was a clear example of how the tendency toward questionable judgment in the course of one’s occupations resulted in negative health outcomes.

Embodied Knowledge of Diabetes

This theme is concerned with how diabetes was experienced and understood physically by participants. Being in tune with one’s body is an important ingredient in diabetes self-management, particularly for someone like Sadie who resisted testing her blood sugar as often as recommended. She instead relied on her body to give her an estimate of her blood sugar, saying, “I’m not going to argue that it’s a good way of care, but your body does have signs for what your blood sugar is. It’s not an accurate method, but I know when [it’s] 69 and when it’s 300.” Sadie’s use of embodied knowledge may have helped her avoid the extreme highs and lows that can lead to acute complications. However, it also exposed her to the risk of developing long-term complications that result from moderately elevated blood sugars over long periods of time.

Another important element of embodied knowledge was understanding the limits of one’s tolerance for high and low blood sugars. Most participants had a sense of what their body could handle and recounted episodes when they had approached those limits. Sergio said,

Embodied knowledge of diabetes proved to be a double-edged sword. On one hand, it sometimes led participants to undertake excess risks because it gave them a false sense of security. On the other hand, it also buffered them from excess anxiety, which could itself lead to risk in some instances. For example, James, who had a fear of developing hypoglycemia, managed his anxiety by chronically underdosing his insulin, which created a risk of high blood sugar.

Health Care Access and Satisfaction

This theme is concerned with participants’ ability to access developmentally appropriate health care, make treatment decisions that met their needs, and negotiate the advantages and disadvantages inherent in such decisions. Insofar as participants were dissatisfied with their health care, they were less likely to adhere to treatment recommendations and were therefore at increased risk of negative health outcomes. A common decision encountered by participants was whether to use insulin injections or an insulin pump, which sometimes involved significant tradeoffs. For instance, Annabel wanted to use an insulin pump, but the clinic she attended lacked the resources to support this treatment option. She had spent many years seeing health care providers who provided unsatisfactory care and did not want to change now that she had found health care providers she trusted. Therefore, she faced the difficult decision of whether to leave the clinic or continue using injections.

Participants had strong opinions about the right treatment approach for them; these opinions were influenced by both practical and emotional considerations. For example, Sadie valued a treatment that allowed her to “walk away” from diabetes for chunks of time, saying, “I just don’t want a medical device attached to me all the time. To me [an insulin pump] is a mini IV, and it would be a constant reminder.” Conversely, others felt that insulin pumps allowed for more flexibility than injections. Leslie recounted her experience of being on injections, saying “[I remember] feeling like I can’t eat, and all my food was counted to the last second. . . . I was like, I can’t do this. There’s no way that would have lasted.” For Leslie, the insulin pump increased her sense of control and self-efficacy in managing diabetes. As illustrated by participants’ strong and opposing opinions about the best treatment for them, the optimal approach to diabetes self-management is highly individualized. Dissatisfaction with their treatment put some participants at risk for negative health outcomes, because they were less likely to adhere to treatment recommendations.

Finally, finding developmentally appropriate health care was a major issue for some participants, who sought health care providers who would consider how their life circumstances and occupational choices influenced their approach to diabetes self-management. For example, Nina had gone to several endocrinologists before finding a clinic specifically for young adults:

As Nina’s experience illustrates, some health care providers used scare tactics or ignored issues of importance to their patients. These approaches created barriers to communication, increasing the likelihood that participants who engaged in potentially risky occupations (such as binge drinking) would experience negative health outcomes, because of a lack of knowledge of how to minimize risk in such situations.

Shifting Physical Contexts

The contexts in which participants carried out their everyday occupations influenced how they implemented their diabetes self-management, which in some cases exposed them to additional risks. For instance, the incident in which Jenny was hospitalized for diabetic ketoacidosis was instigated in part because of the environment she found herself in. She delayed taking her insulin because she was at an amusement park and could not find a private place to administer an injection. Reluctance to perform such self-management tasks in public was common among participants, who worried about the judgment of onlookers. As Annabel shared, “I try to be discreet about it, because to [take insulin injections] in public . . . there are people that are going to think, ‘What is she doing? Why is she doing that?’ They think, ‘Oh, she’s doing drugs.’” Participants’ discomfort with others’ reactions often led them to not perform diabetes self-management tasks in public settings where they felt uncomfortable, thus increasing their risk of negative health outcomes.

Participants’ changing living situations also influenced diabetes self-management, with seemingly minute details of their environment sometimes having an unanticipated impact. For example, when Mark studied abroad, he moved into a home with tile floors, whereas his previous home had vinyl floors. This small change had unforeseen consequences on his diabetes care, as occasionally his insulin bottle would fall out of the refrigerator and shatter on the hard tile floor. Because he was in a foreign country, Mark had to negotiate an unfamiliar health care system to replace the insulin, adding another layer of complexity to something that had never been an issue at home. Although this may seem like a minor concern, emerging adults change residence much more often than those in other age groups (Arnett, 2004). Therefore, situations such as these may conceivably occur frequently and have a significant effect on their ability to manage diabetes.

Social Support, Sensitivity, and Stigma

The participants in the study were highly sensitized to other people’s perceptions of their illness. This stemmed from past experiences of being singled out or stigmatized because of diabetes, as Leslie shared: “When I’m in ballet with all my classmates, and I have to step outside because my blood sugar’s low . . . I feel judged, and ostracized, and different. The ballet teacher always goes out of his way to make me feel different.” Several participants recounted similar situations in which they felt stigmatized because of misunderstandings, such as when Annabel was mistaken for a drug user when a syringe fell out of her bag at a video store. Such incidents led some participants to become increasingly private about their diabetes self-management, so as not to attract undue attention. However, this led to tension between diabetes self-management and other occupations, a tension that participants usually elected to resolve in favor of engagement in the occupation.

Having a stable source of social support was essential for participants to balance diabetes self-management and occupation. They relied on loved ones to provide encouragement and a safety net when they acted irresponsibly. The relationship between Sergio and his brother exemplified the benefits of such a support system; because his brother was helpful but not overbearing, Sergio welcomed his assistance rather than resenting it. “He keeps me from doing the really crazy stuff . . . I know when to stop with alcohol or eating something or whatever. But let’s say sometime I might forget, or get carried away, he’ll stop me. He’ll say, listen, watch out.” By contrast, Annabel felt that her family had always been minimally involved and largely disinterested in her diabetes care, and she wished they would take a more active role:

Annabel’s family’s indifference prompted her to seek their attention by being careless with her diabetes self-management, not checking her blood sugar and skipping insulin injections. This dynamic placed Annabel at high risk for developing complications of diabetes.

Schedules, Routines, and Special Events

Activities with a consistent structure tended to facilitate the acquisition of habits that helped participants manage diabetes, whereas those that occurred inconsistently could make diabetes self-management more challenging. Jenny discovered this when she enrolled in college after a period during which she was disengaged from many activities and had little routine in her daily life. Once she started school, she found that her diabetes self management improved as well: “I’m on a schedule, something I have to do every day. So it’s easier to get on a schedule with my eating habits. . . . Before, one day I would eat at 8, the next day at 10, so it would vary.” Similarly, when Sadie enrolled in the study, her day-to-day routine was highly variable. She was supposed to take an insulin injection at the same time each day, but she struggled to find a consistent time to do so. When she took a job a month later, however, she found that her stable work schedule opened up an opportunity to more effectively manage her diabetes.

In addition to day-to-day scheduling issues, there were challenges to balancing diabetes self-management and occupations across broader spans of time. For instance, college students’ routines shifted dramatically every quarter or semester. This shift made it particularly difficult and frustrating to schedule medical appointments, as Mark described: “If you didn’t schedule it 3 months in advance, you had a real issue getting in. [But] 3 months down the line is a new semester and you don’t actually know what your schedule is when you make the appointment.”

Another issue for participants was negotiating diabetes self-management on special occasions. As Leslie conveyed, the issue was in deciding which occasions counted as “special” to begin with: “There’s always something. . . . This week was finals. Last week was Disneyland, and the week before that was a special dinner with friends.” Similarly, Mark observed the Sabbath with a festive holiday meal each week, and he wondered if this was more frequent an indulgence than his health care providers would recommend. On special occasions, participants were less stringent in their diabetes self-management, a strategy that would not have substantial negative consequences if undertaken periodically. However, it became a potential concern when participants perceived these events to be constant, rather than infrequent, in their everyday lives.