Experiences of Adolescents with Type 1 Diabetes as They Transition From Middle School to High School Katie Fleischman, Melissa K. Smothers, Heidi F. Christianson, Laura Carter, Anthony A. Hains, and W. Hobart Davies University of Wisconsin-Milwaukee 2 Abstract The purpose of this study was to explore the experiences of adolescents with Type 1 Diabetes Mellitus (T1DM) as they transitioned into high school in order to understand the contextual factors that impact diabetic health-related behaviors and self-identity. A qualitative interviewing methodology called consensual qualitative research (CQR) was used. Six high school freshmen with T1DM were interviewed. Adolescents reported both normative as well as diabetes-specific issues (e.g., social challenges of self-care) pertaining to their transition from middle to high school. Implications for school counseling practice are discussed. 3 Experiences of Adolescents with Type 1 Diabetes as They Transition From Middle School to High School The transition from middle to high school is significant for many adolescents, frequently resulting in a new, complex school environment and new peers (Graber & Brooks-Gunn, 1996; Newman, Lohman, Newman, Myers, & Smith, 2000). Much is unknown, however, about how adolescents with Type I diabetes mellitus (T1DM) navigate this transition. The developmental tasks likely differ for adolescents living with T1DM because they must also manage their illness and take responsibility for their own health as it relates to their chronic disease (Schur, Gamsu, & Barley, 1999). Previous research has suggested that some adolescents with T1DM struggle with adherence to the treatment regimen (Thomas, Peterson, & Goldstein, 1997). Adolescents with diabetes need to practice self-care behaviors, such as checking blood sugar, counting carbohydrates, administering insulin, and engaging in regular exercise to maintain glucose levels within normal limits. Adherence to such a regimen, in addition to experiencing the normative structural, social, and interpersonal changes of high school, provides a unique challenge for these adolescents. Previous quantitative research on adolescents with T1DM has examined issues such as support (Hains et al., 2007; Hanna & Guthrie, 2001; Helgeson, Reynolds, Shestak, & Wei, 2006; La Greca, Bearman, & Moore, 2002) and adjustment (Band & Weisz, 1990; Helgeson, Snyder, Escobar, Siminerio, & Becker, 2007; Smith, Mauseth, Palmer, Pecoraro, & Wenet, 1991), and how these issues relate to adherence and metabolic control. Unfortunately, little is known about how adolescents with T1DM diabetes navigate normal developmental changes involved in the movement from 4 middle school to high school and how this transition relates to such issues as adherence behavior, peer relationships, support, and disclosure of health status. This transition has the potential to negatively affect self-care behavior in adolescents due to their increasing independence from family (Olsen & Sutton, 1998). One way to examine this issue is to investigate contextual factors of self-care and illness disclosure in order to help adolescents maintain better metabolic control. That is, understanding how an adolescent makes sense of his or her diabetes as it affects new and changing interpersonal relationships is essential to understanding how adolescents integrate diabetes into their self-concept, potentially affecting self-care behavior. Currently, few quantitative and no qualitative accounts exist regarding the extent to which having diabetes impacts how adolescents experience the transition from middle to high school, including meeting new peers, utilizing support from friends, and self-care behaviors (La Greca et al., 2002). These developmental events can potentially cause stress and influence health-related behaviors for children with chronic disease (La Greca et al., 2002). Consequently, we wanted to explore the experiences of adolescents with T1DM as they transitioned into high school in order to understand the breadth of contextual factors that impact diabetic health-related behaviors and integration of diabetes into their developing self-identity. The acquisition of this knowledge would be beneficial for school counselors. Because of their training and professional role, school counselors would likely be called upon to provide academic and social-emotional support for students making this significant transition (Kaffenberger, 2006). At the same time, many school counselors have not had 5 adequate training to deal with chronic illness conditions, so this information may identify common issues for these adolescents with T1DM (Hamlet, Gergar, & Schaefer, 2011). To achieve these ends we used a qualitative interviewing methodology called consensual qualitative research (CQR). Basically, the qualitative CQR interview sought to elicit the experiences of adolescents currently in the ninth grade. Thus, we investigated common themes that arose from adolescents telling their experiences of adherence efforts, peer relationships, support, and disclosure of health status in a new setting. Method Participants Six fourteen- and fifteen-year-old adolescents (5 females, 1 male) with T1DM participated in this study. All participants were European-American. Participants were entering the ninth grade and receiving outpatient diabetes maintenance treatment every three to four months at a pediatric hospital in a large Midwestern city. Participants varied in amount of time living with diabetes. Participants were recruited through one of two methods. First, members of the treatment team of the Diabetes Clinic gave brief written description of the study to the adolescents, who meet the age criteria and their parents when they came in for their clinic visit. If the adolescent and the parent(s) were interested in hearing more about the study, they signed the form giving permission for the researchers to contact them. The family provided a phone number or an email address on the form for this purpose. Then a doctoral student contacted the family to describe the project in more detail. If the family was still interested at this point, an appointment was arranged to meet with the 6 family to review and sign the consent form, explain the interview procedure and then interview the youth. The doctoral student making the phone call met with the family and conducted the interview. The researcher offered to meet wherever the family felt comfortable, such as the family home. The second means of recruiting participants involved contacting by mail a group of adolescents who had recently began the ninth grade and who just completed their participation in another study. Researchers sent a mailing to these 21 youths and their parents which contained a) a short letter asking them to think about participating in another research study and introducing the brief description of the study, b) the brief description of the study described above, and c) a postage paid return envelope. If the families were interested in hearing more about the study, they signed the form permitting researchers to contact them and returned the form in the provided envelope. The family provided a phone number or an email address on the form for this purpose. A doctoral student then contacted the family to describe the project in more detail. If the family was still interested at this point, an appointment was arranged to meet with the family to review and sign the consent form, explain the interview procedure, and interview the youth. The doctoral student who made the phone call met with the family and conducted the interview. The researcher offered to meet wherever the family felt comfortable. Twelve adolescents initially expressed interest in participating in the project; however, only 6 completed the interview. Researchers The primary research team consisted of three counseling psychology doctoral students and one counseling master’s degree student. The auditor was a counseling 7 psychology professor familiar with consensual qualitative research (CQR) methodology. All members were trained by two of the counseling psychology doctoral students that had educational experience in the CQR methodology and interviewing. Members read several articles (Hill, Thompson, & Williams, 1997; Hill et al., 2005) and held several discussions on the CQR methodology and qualitative interviewing. Before data collection, the team discussed their expectations and biases. The research team had prior expectations that the data might be congruent with the varied results found in the literature. For instance, one team member was aware of past research which indicated that adolescents with T1DM may be overly concerned with impression management and attribute negative reactions from peers while doing self-care in social situations (Hains et al., 2007; Thomas et al., 1997). With the use of multiple researchers, along with preliminary discussion among the team about prior expectations, the bias of an individual towards finding this type of experience in the reports of the participants could be circumvented (Hill et al., 1997). Interview Protocol An interview protocol was developed based on a literature review related to adolescents with T1DM, treatment adherence, self-care, and the transition into high school. The interview guide included demographic data and open-ended topics such as changes experienced from middle to high school, demands associated with living with diabetes, coping with diabetes, the role of support from peers and family, disclosure of diabetes status, and the experiences of performing diabetes self-care. 8 Interviewers Interviewers included two advanced counseling psychology doctoral students with training in interviewing. At the initial meeting with the parent and adolescent, the researcher reviewed the consent form, the length of the interview, topics covered (friends and peers, support for diabetes, transition to high school, disclosing of diabetes status, and adherence), and confidentiality and limits thereof. After obtaining consent, the researcher and adolescent met in a quiet area for taping and privacy purposes. Recorded face-to-face interviews were conducted with adolescents at their homes, each of which lasted 30 to 60 minutes. All questions were asked to each adolescent; furthermore, a list of probe questions was used to gather any additional information or clarification. Additional probes were used to explore issues that emerged in the interview for each participant (Hill et al., 1997). All interviews were taped and transcribed verbatim. Both interviewers recorded their observations and reactions after each interview. The participants were given a $10 gift certificate to a regional movie theatre chain for their participation. Data Analysis This study used a qualitative design based on consensual qualitative research (CQR) (Hill et al., 1997, 2005). Using the CQR method, researchers explored and described in-depth the experiences of adolescents with Type 1diabetesT1DM as they encounter new social situations by capturing the phenomena as it naturally occurs. There were several steps in the procedures for analyzing the data. First, domains (i.e., themes) were constructed by dividing up the responses to the open-ended interview questions. Second, core ideas (i.e., summaries) were formed from all the 9 material from each domain for each adolescent’s response. Third, cross-analysis was performed by finding common themes transcending from domains and core ideas. Along the process, the primary team made judgments about each decision until consensus was reached and the best structure developed. At each step, the raw data was continually reviewed making sure the final decisions were based on the data. Lastly, the auditor viewed the judgments during the cross analysis stage to ensure the primary team did not fail to notice any of the essential data (Schlosser, Knox, Hill, & Moskovitz, 2003). Results The following six domains were constructed from the interviews: Transition, Identity, Support, Friends and Peers, Disclosure, and Self-Care. Following the procedure described by Hill et al. (2005), categories were developed from core ideas across all adolescents within each domain. Categories were considered “general” in nature when all of the adolescents reported the same issue (6 cases in the current study); “typical” when 4-5 adolescents reported the same issue; and “variant” when 2-3 reported the issue. For this study, only the “General” and “Typical” categories are reported. Transition General reports (that is, all adolescents reporting this experience) in this category by adolescents indicated normative, developmental changes to high school; such as engagement in new sports, adjusting to the new class schedule, having new teachers with larger classes, and more homework. Furthermore, adolescents reported having an 10 easy time making new friends. Adolescents reported meeting new friends through old and new friends, new activities, and classes. Nevertheless, typical reports (that is, 4-5 adolescents reporting this experience) indicated that adolescents missed their old friends, especially peers from middle school. One adolescent reported she still talks to most of her old friends, but it has been different because she doesn't see them as much as she once did. Throughout this transition, adolescents typically reported exploring their identity or staying congruent to who they were before the transition. Adolescents reported having the same identity, changing their personality attributes (e.g., shy to social), or changing their attire. Identity General reports suggested that adolescents self-identified based on their activities (e.g., sports) and interests (e.g., music). In addition, they generally self- identified in reference to their social group and/or affiliation with others, with some adolescents reported using adjectives such as preppy, tomboyish, athletic, and popular; another two adolescents reported fitting in with everybody. Conversely, typical reports showed adolescents self-identified based on personality traits and mannerisms (e.g., shy, friendly, outgoing). Moreover, adolescents reported multiple components of their identity, including, but not limited to, diabetes. One adolescent described herself as being loud, extroverted, outgoing, and diabetic. Another adolescent also noted diabetes in her identity description. On the other hand, another adolescent reported that she does not consider diabetes as part of her identity when she is around people who do not know she is diabetic.