Evaluate a Family Behavioral Intervention for Diabetes
Most adolescents (50%) and parents (58%) thought the TeamWork Project sessions were "pretty helpful." Similarly, most adolescents (58%) and parents (50%) reported that they learned a "decent amount" from the sessions despite having finished on average 2 years ago; coping skills participants (75%) believed that they learned more new information than did education group participants (33%). With respect to the coping skills sessions, the majority of adolescents and parents said that the communication session (67% of adolescents, 83% of parents), problem solving session (83% of adolescents, 83% of parents), avoiding arguments session (67% of adolescents, 83% of parents), and attitude/behavior change session (67% of adolescents, 83% of parents) were "pretty helpful" or "very helpful." Half of adolescents and parents in the coping skills group named the "avoiding arguments" session as their favorite session.
Two overarching TeamWork program themes emerged: "TeamWork content" and "TeamWork structure." Three T1D management–related themes were also identified: "transition of responsibility," "current and future challenges," and "future intervention considerations." Codes within each theme were also identified. Definitions and examples for each code are presented in the Table.
Reinforcement. Participants in both groups noted that TeamWork supported their use of current T1D skills and reinforced previous T1D education. One mother noted, "[The program] reaffirmed what I was doing; that I was trying to do [T1D management] right."
Communication and Problem Solving. All parents and most adolescents in the coping skills group believed that TeamWork helped their family discuss T1D challenges and concerns more effectively and encouraged the use of effective problem-solving strategies. According to one mother, she and her daughter now "have that rapport and the ability to discuss [T1D]." Many participants believed communication was an essential component of TeamWork because it affects so many other aspects of T1D management and helped them communicate with other family members.
New Perspectives and Skills. TeamWork helped coping group participants understand their other family members' T1D perspectives and taught them concrete skills they could apply at home. Parents, in particular, stated that it was easier to manage their T1D-related stress if they accounted for their adolescent's opinions and views about T1D and were given T1D-related information directly from the counselor. Noted one father, "As a parent, you worry so much about the highs, the lows, but the kids—they don't think about that. It kind of helped keep it in perspective so that we don't get into arguments." Similarly, another parent stated, "You felt like when you left, you had something concrete you could do."
Program was Beneficial. The majority of participants in both the coping skills and education groups indicated that they liked TeamWork and thought it was helpful. In particular, participants liked the materials, such as study magnets and handouts, and the concrete skills they learned that could apply to other situations and caregivers. According to one adolescent, "I found that talking through stuff, especially with my mom through this program, has helped me to handle situations with my dad also." Similarly, a mother who had two children with T1D reported that some of the topics "were not at all relevant to my daughter [who was in the study] but were very applicable to my son [who was not in the study]."
Return to Old Habits. Despite the benefits that participants attributed to TeamWork, some coping skills group participants acknowledged that it is easy to forget new T1D skills and strategies over time and therefore it is difficult to enact long-term behavior change. One mother succinctly said, "It's easy to hear it and even to gain from it, but I think it's easy to slip back into old patterns and forget."
Session Structure and Timing. Most participants in both groups liked the structure and timing of TeamWork sessions, including their co-occurrence with regularly scheduled diabetes clinic visits, because it was convenient and gave them something to do while waiting to see their physician. However, some participants disagreed and thought the co-occurrence made the appointment too long. With respect to the length of time between TeamWork sessions (3 to 4 months), participants had varying opinions. One mother stated, "You want to give time to kind of mull over and work on those issues in that particular session," but another parent thought that monthly sessions would be ideal. Some participants also wanted more than four sessions. Finally, most parents liked attending sessions with their adolescent; however, not all adolescents wanted their parent in the session with them. One adolescent noted, "I would have talked more if my dad wasn't in the room," whereas another adolescent indicated "it was the same as if [my mom] wasn't there. I mean, she knows everything I do."
Varying T1D Program Needs. Both coping skills and education group participants noted that anyone can benefit from TeamWork, but specific youth may benefit the most, depending on age, length of diagnosis, and glycemic control. Early adolescence was frequently cited as the most appropriate target age for TeamWork because "eighth grade, going into high school, was when you start becoming more independent" and is when more T1D problems may arise and adolescents become "tired of dealing with this." Coping skills group participants were conflicted about whether TeamWork would be appropriate immediately after T1D diagnosis; some thought it would help orient patients to T1D, whereas others thought it may be too overwhelming "when you're just trying to adapt to the very concrete carb counting, prescription managing kind of stuff." In contrast, most education group participants indicated, "I would have loved to have those [sessions] when we were first diagnosed," and one adolescent noted, "The topics came to us kind of late because I had already been diagnosed since I was six." Participants in both groups also thought TeamWork could apply to patients of varying glycemic control. One adolescent stated, "If they're already doing a good job, then maybe they can just have new ideas on different things to try and make it better. But a person managing it poorly—then they need to know [these skills]."
Allocation of T1D Care Responsibility. The majority of participants reported that adolescents were primarily responsible for T1D care, including blood glucose monitoring, insulin injections, and carbohydrate counting. Participants approximated that the shift in T1D care occurred around the beginning of high school. Families reported that adolescents gain confidence as they get older, adolescents are away from home more frequently, and parents trust them more. Parents also wanted to prepare their adolescents for independent living; as one mother stated, "He does go off to college real soon, so he's gotta learn to do it all on his own." However, nearly all participants reported that parents were still involved in decision making and monitoring of day-to-day T1D care by checking in with adolescents, attending clinic appointments, scheduling appointments, picking up prescriptions, and assisting with sick day management. Many participants indicated that parents are "managing the big, big picture" or providing "emotional support." One parent also noted that if her adolescent was managing T1D poorly, she would take control of T1D management for a period. Participants reported that parents and adolescents work together for many aspects of T1D care as well, including insulin administration, basal rate/bolus adjustments, food choices, supply management, and pump site changes. One parent said that she and her daughter "constantly talk" about T1D and an adolescent indicated, "If we need to adjust the insulin, we figure that out together." Together, these data indicate that adolescents have greater responsibility for their daily T1D care but that parents continued to be involved, suggesting that supporting constructive communication between parents and adolescents is an important intervention component for this population.
The majority of participants indicated that multiple challenges that complicate T1D management should be addressed in an intervention for older adolescents. Stressors included physical activity, nutrition, BG management, stress, school, social support, driving, and post–high school plans. See Table for additional details and examples of these subcategories.
Participants provided their thoughts about additional components that could be included in future interventions as well. Some noted that reeducation about previously learned T1D skills and T1D complications were significant topics to discuss with adolescents as they got older because "you definitely go through challenges in high school, and sometimes you forget… the little things." Participants specifically mentioned a desire to learn more about the biological mechanisms of T1D, insulin regimen options, BG management, nutrition, travel, physical activity, seizures, T1D disclosure, and sexual complications. Some parents believed that regular check-ins with psychology are important and beneficial. Participants also believed that a variety of types of T1D-related technology could also be useful, such as Web sites, text messaging, phone applications, and social media, because they can provide T1D information, management assistance, social support, and "would help keep everything at [our] fingertips."
Results
Participant Satisfaction Survey
Most adolescents (50%) and parents (58%) thought the TeamWork Project sessions were "pretty helpful." Similarly, most adolescents (58%) and parents (50%) reported that they learned a "decent amount" from the sessions despite having finished on average 2 years ago; coping skills participants (75%) believed that they learned more new information than did education group participants (33%). With respect to the coping skills sessions, the majority of adolescents and parents said that the communication session (67% of adolescents, 83% of parents), problem solving session (83% of adolescents, 83% of parents), avoiding arguments session (67% of adolescents, 83% of parents), and attitude/behavior change session (67% of adolescents, 83% of parents) were "pretty helpful" or "very helpful." Half of adolescents and parents in the coping skills group named the "avoiding arguments" session as their favorite session.
Interview Data
Two overarching TeamWork program themes emerged: "TeamWork content" and "TeamWork structure." Three T1D management–related themes were also identified: "transition of responsibility," "current and future challenges," and "future intervention considerations." Codes within each theme were also identified. Definitions and examples for each code are presented in the Table.
TeamWork Content
Reinforcement. Participants in both groups noted that TeamWork supported their use of current T1D skills and reinforced previous T1D education. One mother noted, "[The program] reaffirmed what I was doing; that I was trying to do [T1D management] right."
Communication and Problem Solving. All parents and most adolescents in the coping skills group believed that TeamWork helped their family discuss T1D challenges and concerns more effectively and encouraged the use of effective problem-solving strategies. According to one mother, she and her daughter now "have that rapport and the ability to discuss [T1D]." Many participants believed communication was an essential component of TeamWork because it affects so many other aspects of T1D management and helped them communicate with other family members.
New Perspectives and Skills. TeamWork helped coping group participants understand their other family members' T1D perspectives and taught them concrete skills they could apply at home. Parents, in particular, stated that it was easier to manage their T1D-related stress if they accounted for their adolescent's opinions and views about T1D and were given T1D-related information directly from the counselor. Noted one father, "As a parent, you worry so much about the highs, the lows, but the kids—they don't think about that. It kind of helped keep it in perspective so that we don't get into arguments." Similarly, another parent stated, "You felt like when you left, you had something concrete you could do."
Program was Beneficial. The majority of participants in both the coping skills and education groups indicated that they liked TeamWork and thought it was helpful. In particular, participants liked the materials, such as study magnets and handouts, and the concrete skills they learned that could apply to other situations and caregivers. According to one adolescent, "I found that talking through stuff, especially with my mom through this program, has helped me to handle situations with my dad also." Similarly, a mother who had two children with T1D reported that some of the topics "were not at all relevant to my daughter [who was in the study] but were very applicable to my son [who was not in the study]."
Return to Old Habits. Despite the benefits that participants attributed to TeamWork, some coping skills group participants acknowledged that it is easy to forget new T1D skills and strategies over time and therefore it is difficult to enact long-term behavior change. One mother succinctly said, "It's easy to hear it and even to gain from it, but I think it's easy to slip back into old patterns and forget."
TeamWork Structure
Session Structure and Timing. Most participants in both groups liked the structure and timing of TeamWork sessions, including their co-occurrence with regularly scheduled diabetes clinic visits, because it was convenient and gave them something to do while waiting to see their physician. However, some participants disagreed and thought the co-occurrence made the appointment too long. With respect to the length of time between TeamWork sessions (3 to 4 months), participants had varying opinions. One mother stated, "You want to give time to kind of mull over and work on those issues in that particular session," but another parent thought that monthly sessions would be ideal. Some participants also wanted more than four sessions. Finally, most parents liked attending sessions with their adolescent; however, not all adolescents wanted their parent in the session with them. One adolescent noted, "I would have talked more if my dad wasn't in the room," whereas another adolescent indicated "it was the same as if [my mom] wasn't there. I mean, she knows everything I do."
Varying T1D Program Needs. Both coping skills and education group participants noted that anyone can benefit from TeamWork, but specific youth may benefit the most, depending on age, length of diagnosis, and glycemic control. Early adolescence was frequently cited as the most appropriate target age for TeamWork because "eighth grade, going into high school, was when you start becoming more independent" and is when more T1D problems may arise and adolescents become "tired of dealing with this." Coping skills group participants were conflicted about whether TeamWork would be appropriate immediately after T1D diagnosis; some thought it would help orient patients to T1D, whereas others thought it may be too overwhelming "when you're just trying to adapt to the very concrete carb counting, prescription managing kind of stuff." In contrast, most education group participants indicated, "I would have loved to have those [sessions] when we were first diagnosed," and one adolescent noted, "The topics came to us kind of late because I had already been diagnosed since I was six." Participants in both groups also thought TeamWork could apply to patients of varying glycemic control. One adolescent stated, "If they're already doing a good job, then maybe they can just have new ideas on different things to try and make it better. But a person managing it poorly—then they need to know [these skills]."
Transition of T1D care
Allocation of T1D Care Responsibility. The majority of participants reported that adolescents were primarily responsible for T1D care, including blood glucose monitoring, insulin injections, and carbohydrate counting. Participants approximated that the shift in T1D care occurred around the beginning of high school. Families reported that adolescents gain confidence as they get older, adolescents are away from home more frequently, and parents trust them more. Parents also wanted to prepare their adolescents for independent living; as one mother stated, "He does go off to college real soon, so he's gotta learn to do it all on his own." However, nearly all participants reported that parents were still involved in decision making and monitoring of day-to-day T1D care by checking in with adolescents, attending clinic appointments, scheduling appointments, picking up prescriptions, and assisting with sick day management. Many participants indicated that parents are "managing the big, big picture" or providing "emotional support." One parent also noted that if her adolescent was managing T1D poorly, she would take control of T1D management for a period. Participants reported that parents and adolescents work together for many aspects of T1D care as well, including insulin administration, basal rate/bolus adjustments, food choices, supply management, and pump site changes. One parent said that she and her daughter "constantly talk" about T1D and an adolescent indicated, "If we need to adjust the insulin, we figure that out together." Together, these data indicate that adolescents have greater responsibility for their daily T1D care but that parents continued to be involved, suggesting that supporting constructive communication between parents and adolescents is an important intervention component for this population.
Current and Future Challenges
The majority of participants indicated that multiple challenges that complicate T1D management should be addressed in an intervention for older adolescents. Stressors included physical activity, nutrition, BG management, stress, school, social support, driving, and post–high school plans. See Table for additional details and examples of these subcategories.
Future Intervention Considerations
Participants provided their thoughts about additional components that could be included in future interventions as well. Some noted that reeducation about previously learned T1D skills and T1D complications were significant topics to discuss with adolescents as they got older because "you definitely go through challenges in high school, and sometimes you forget… the little things." Participants specifically mentioned a desire to learn more about the biological mechanisms of T1D, insulin regimen options, BG management, nutrition, travel, physical activity, seizures, T1D disclosure, and sexual complications. Some parents believed that regular check-ins with psychology are important and beneficial. Participants also believed that a variety of types of T1D-related technology could also be useful, such as Web sites, text messaging, phone applications, and social media, because they can provide T1D information, management assistance, social support, and "would help keep everything at [our] fingertips."