The Science of Diabetes Self-Management and Care2024, Vol. 50(4) 287–297© The Author(s) 2024Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106241258999journals.sagepub.com/home/tde
AbstractPurpose: The purpose of the study was to explore the shared medical appointment model (SMA) with youth with type 2 diabetes (T2DM) and their caregivers to identify health education needs, access barriers, and recommendations for intervention design.
Methods: Patient and caregiver focus group interviews were conducted in English and Spanish to address these objectives: (1) identify barriers to participation in group sessions, (2) identify barriers to diabetes selfmanagement, and (3) prioritize preference for SMA themes. Qualitative analysis identified strategies for patient recruitment and engagement and recommendations for curriculum design of a future SMA model for youth with T2DM.
Results: Both adolescents and caregivers supported the development of an SMA model. Adolescents expressed concerns of initial discomfort and nervousness, whereas young adults described stigma as the main barrier to joining a group. Patients emphasized the importance of prioritizing youth comfort and families’ convenience. Early adolescents and young adults preferred autonomy in the choice to join a group, whereas mid adolescents and caregivers preferred that the caregivers make that decision. Participants recommended nine topics regarding barriers to diabetes care. The topics that received the most enthusiasm were nutrition, exercise, navigating peer interactions, and stress management.
Conclusions: Youth with T2DM and their caregivers perceived many benefits of an SMA model and provided feedback to guide the development of a health education curriculum that could be integrated into an SMA clinic.
The prevalence of youth onset type 2 diabetes mellitus (T2DM) has been rising at an annual rate of 4.8% in the United States,1 with a disproportionate rise among African American, Latinx, and American Indian communities. The number of cases is projected to quadruple by 2050.2 Unfortunately, most youth with T2DM do not attain the recommended glycemic target at long-term follow-up and develop complications early. In the largest longitudinal study of youth with T2DM, 60% of participants developed at least 1 diabetes-related complication after a mean follow-up of 13 years (mean age of 26.4 years).3 At the current trajectory, renal failure, blindness, and heart disease will develop at high rates in early adulthood, putting youth with T2DM at risk for premature exit from the workforce and reduced life expectancy.
The current treatment model primarily focuses on medication intensification, which often does not improve glycemic control.4 Barriers to consistent medication administration and lifestyle modification include the lack of acceptance of the diabetes diagnosis, distrust of recommended medication, food and housing insecurity, and depression and anxiety.5-7 The standard care delivery model does not adequately address strategies to help youth with T2DM manage these barriers to diabetes management.8 Despite treatment guidelines that recommend the inclusion of psychosocial support for youth with T2DM, structural barriers limit access to mental health services for children with chronic illness.9,10 There is an urgent need to develop an alternative, sustainable youth onset T2DM care model that integrates psychosocial support into diabetes management.
At Children’s Hospital Los Angeles (CHLA), the endocrinology team previously created a peer group intervention for youth with T2DM with an elevated A1C (>8%), called CLUB, to more comprehensively address psychosocial needs. Concurrent after-hours group sessions were held for adolescent and young adult patients and their caregivers, facilitated by a psychologist and a bilingual nurse practitioner. Even though glycemia did not improve with this psychosocial intervention, the CLUB intervention taught the endocrinology team several lessons: (1) Nearly 40% of patients referred to CLUB declined participation or did not attend the scheduled sessions, with multiple families citing transportation barriers and safety concerns for evening visits, and (2) cohorts in which at least four participants were present per session had a more interactive group dynamic. These observations suggest that interventions requiring time commitment beyond the usual clinic visits may be poorly attended due to logistical barriers, but bringing together small groups of patients and families can support deeper engagement in care. This experience motivated the endocrinology team to identify an intervention that occurs as part of routine clinic attendance to improve accessibility and provide a more engaging care model.
The shared medical appointment (SMA) model is a promising approach to comprehensively addressing medical and psychosocial needs within typical appointment times. SMA is a clinical model that has been successfully utilized to address multiple barriers in diabetes care, including improving psychosocial outcomes. Most SMA models include individual time between the clinician and the patient and a group session that may include a diabetes educator, dietician, social worker, and/or clinical psychologist. Group intervention often facilitates discussion of a patient’s social environment and may help address adverse social determinants of health.11 The group dynamic also provides peer support and promotes group-based problem-solving. Helping patients to be more active in their self-management and more empowered in their health care could reduce diabetes distress and improve glycemic control.12,13 In addition, SMA clinics have been shown to improve psychosocial well-being in adults with T2DM and adolescents with type 1 diabetes (T1D).14-16 The SMA has been adapted for youth with T1D within CHLA to meet the needs of the ethnically and socioeconomically diverse community that CHLA serves. Early results suggest that the SMA model for T1D was positively received by the CHLA patients, of whom 50% were Latinx and receive public insurance. Compared to Latinx peers receiving standard care, Latinx youth assigned to virtual SMA clinic reported an A1C reduction of 1.2% (P = .004) and improvement in multiple diabetes-related distress subscales (J. Raymond, unpublished data, 2023).
The recent success of the SMA program in pediatric T1D at CHLA motivated an examination of SMA as a promising model for delivering person-centered medical care and behavioral support for youth with T2DM. However, based on the endocrinology clinic’s experience implementing the CLUB psychosocial intervention for youth with T2DM, it became clear that the specific interests, needs, and barriers of patients needed to be taken into account for new models of care to be successful. Furthermore, due to the different disease states and psychosocial needs, the SMA curriculum will need to be redesigned for youth with T2DM. The purpose of the current study was to explore the SMA model with youth with T2DM and their caregivers to identify health education needs, access barriers, and recommendations to guide the design of a new model of care at CHLA. In the current study, researchers partnered with youth with T2DM and their caregivers to design a person- and family-centered SMA model to target barriers of effective diabetes care. Specifically, patient and caregiver focus group interviews were conducted to identify barriers to SMA recruitment and participation and to identify topics that families deem valuable in their diabetes management. Qualitative data generated from this study will allow researchers to build the SMA curriculum and design a care model that could better support both the medical and psychosocial needs of the patient population at CHLA.
Participants were youth with T2DM receiving (or previously receiving) their care at the CHLA T2DM clinic and their caregivers. Patients between 12 and 25 years old and the caregivers of minor aged participants were recruited to help guide a patient- and family-centered care model. Participants were recruited from current clinic attendees or prior participants of the CHLA T2DM Clinic Registry who consented to being contacted for future studies. Minor patients who agreed to participate provided signed assent, and a parent/legal guardian provided signed informed consent on their behalf. Adult patients signed their own informed consent forms. Caregivers or legal guardians also signed an informed consent form for their own participation. Additional patient inclusion criteria were (1) speaking English, (2) agreeing to be audio-recorded, and (3) not being nonverbal or having a severe cognitive delay. Additional inclusion criteria for caregivers were (1) speaking English or Spanish and (2) agreeing to be audio-recorded. These procedures were approved by the CHLA Institutional Review Board.
Because this was an applied study, with an emphasis on timely but thoughtful implementation of a new care model in a specific clinical setting, all study procedures were selected to maximize efficiency while adhering to rigorous research standards. This study utilized focus group interviews because they are an appropriate vehicle for engaging health care consumers in the design of interventions.17 Group interviews have the simultaneous benefits of requiring less research personnel time and producing rich, deep data on a topic of interest.18 Group interviews followed a semistructured guide targeting a limited number of primary questions (see Table 1 for guide).19 Participants were prompted to discuss their (or their children’s) experiences managing T2DM, barriers to self-management, and design ideas for an SMA model including separate group educational sessions for youth and caregivers.
Participants were grouped with those of similar sociodemographic characteristics, including developmental age (e.g., 12-14 [early adolescent], 15-17 [mid adolescent], or 18 to 25 years old [young adult]) and family member role (e.g., youth, caregivers).20 The group interviews were facilitated by a single researcher, either CS, a licensed clinical psychologist, or KCD, a postdoctoral psychology fellow. Although both facilitators have clinical experience providing psychotherapy to adolescents and young adults with chronic illnesses, neither CS nor KCD knew the participants before the group interviews occurred. All group interviews took place in person at CHLA and were audio-recorded. CS and KCD also took notes during the group interviews and debriefed with coauthors LC and JS immediately after the group interviews concluded. Group interviews were scheduled on Saturdays for participants’ convenience. Each participant received $60 on a prepaid cash card for attending the focus group. CS maintained an audit trail throughout the teams’ process of clarifying the research questions, designing the study, generating the interview guide, and conducting the focus group interviews. To protect patients’ and caregivers’ confidentiality, the qualitative data will not be made available to other researchers.
Focus group data were analyzed using the rapid assessment process.21 This analytic approach is appropriate for time-limited research projects with very specific research questions,22 particularly when designing new interventions.23 Rapid assessment reduces the expense and time required to complete qualitative analysis, primarily by removing the requirement to produce verbatim transcripts and complete line-by-line coding.21 This streamlined process can produce rich, contextually relevant information to guide implementation projects,24,25 like the one planned at CHLA to design and launch a new care model within a specific clinical setting. Researchers have found mostly overlapping themes when using rapid analysis or more traditional methods such as thematic analysis.26
The research team followed the rapid assessment steps as first described by Hamilton,27 which emphasizes constructing rigor28 by selecting coherent methods and recruiting sufficient samples to adequately address the research questions and convening researchers with established knowledge of a clinical issue to iteratively engage in the analytic process.29 The team collaborated on the development of a template to use to transform group interview data into a summary based on neutral domain names (see Table 2). Either CS or KCD listened to each group interview recording, took notes using the summary template developed by the team, and noted timestamps for particularly illustrative quotations. Researchers could pause, rewind, and relisten to the focus group recording as much as necessary throughout this process. CS organized data from each template into a single matrix with columns for each template domain and rows for each focus group. After each research team member had reviewed the transformed data independently, the full team met for a 2-hour analysis meeting to collaboratively generate key themes to guide the design of the SMA model for youth with T2DM. This analysis meeting followed the “sort and sift, think and shift” process in which team members reviewed the full matrix of summary data; proposed themes; discussed the clarity, coherence, and applicability of themes; returned to the data to assess how well specific examples from the summary templates supported the themes in development; and finally, mutually agreed they had generated meaningful themes to inform the next stage of the SMA design process.30 CS continued to maintain the audit trail throughout the analytic process, including intentions and decisions made during the completing of summary templates, preparation of the data matrix, the team meeting generating key themes, and the manuscript writing process through which team members collaborated on defining and explaining themes in iterative drafts.
A total of 24 individuals participated in the study. There were 3 group interviews with adolescent and young adult patients (n = 14 patients; 8 young women; 6 young men) and 2 with caregivers (n = 10 caregivers; 9 mothers; 1 father). Among the patients, 11 (78.6%) identified as Hispanic/Latino, 2 (14.3%) identified as unknown, and 1 (7.1%) identified as White. All of the caregivers participating in the study were biological parents of the patients, and all spoke Spanish. The duration of the group interviews ranged from 58 minutes to 84 minutes (M = 74.00 minutes; SD = 12.88).
Patient views of the SMA model. The team generated an overarching theme of patient views of SMA with 5 subthemes. This theme encapsulated how early adolescents, mid adolescents, and young adults with T2DM responded to the researchers’ description of the SMA model, including their interest in, emotional reaction to, and enthusiasm for the concept. Across age groups, patients supported the development of an SMA model and perceived connection and learning as the greatest benefits. However, enthusiasm for SMA was stronger at each progressive developmental stage. Youth, both early adolescents and mid adolescents, emphasized that many teens would likely feel nervous to participate in a group clinic at first, whereas young adults described stigma as the greatest barrier to joining a group defined by T2DM. Table 3 organizes and describes each theme and subtheme and presents illustrative quotations. All phrases in quotation marks are verbatim remarks from participants. When cells span columns, this indicates overlapping feedback from participants at different developmental stages. Themes limited to a single column represent distinct feedback from that particular age group.
Patient recommendations for implementing the SMA model. A second theme the team identified in patient feedback was recommendations to guide the execution of an SMA clinic at the hospital, comprised of 7 subthemes. Broadly, patients suggested that the SMA clinic should be designed to prioritize youth comfort and families’ convenience. They gave suggestions for enhancing the appeal of an SMA clinic (eg, offering rewards, advertising that the group education sessions include fun activities rather than only verbal discussions or classroom-like instruction) and tailoring topics based on personal characteristics such as time since diagnosis and gender. There was a difference of opinion about how to refer youth to the group clinic—early adolescents and young adults emphasized patient autonomy over the decision to participate (not being obligated to participate by health care providers and caregivers), whereas mid adolescents discussed the need for young people to be pushed to do something good for them even if they do not want to do it independently. See Table 3 for description of each subtheme in this category including illustrative quotations.
Caregivers views of the SMA model. The team also generated an overarching theme of caregiver views of SMA, with 3 subthemes. This theme captured how caregivers perceived the SMA model, including their initial interest in or concerns about the concept. Caregivers enthusiastically supported the SMA model. Like the patients, they identified connection and learning as key benefits and also indicated that an SMA clinic could provide motivation for selfmanagement. Similar to the themes generated from the adolescent group interviews, caregivers of early adolescents also reported concerns about youth anxiety being a barrier to patients participating in the SMA model. Caregivers of mid adolescents described fewer worries about their children at present, in contrast to caregivers of early adolescents, and indicated that the first few years of adjustment to a T2DM diagnosis were the most difficult, as was adjusting to middle school and navigating the child-to-adolescent transition, in general. By the time their children reached high school and had adapted to T2DM somewhat, they reported there were fewer significant self-management problems to resolve. This difference in active worry made the 2 group interviews different in tone; the caregivers of early adolescents expressed stronger desire for support to help their children and families cope with T2DM, and caregivers of mid adolescents were interested in the clinic but less urgently expressing a need for greater support.
Table 4 presents each subtheme (in italics) in detail, with a description and illustrative quotations. Caregivers’ quotations have been translated from Spanish to English. When cells span both columns, this indicates these subthemes were present in focus groups with caregivers of both early adolescents and mid adolescents. Those limited to a single column represent distinct feedback between caregivers of differently age children.
Caregiver recommendations for implementing the SMA model. The research team generated a theme covering caregivers’ advice for how to implement a clinic based on SMA in this particular health care setting, with 4 component subthemes. Caregivers emphasized considering convenience and accessibility factors in the clinic design and supported the idea of assigning youth to the SMA clinic rather than giving them the decision to join. Caregivers of early adolescents advocated that one-on-one consultation with providers still be an important aspect of their children’s health care. See Table 4 for description of each subtheme along with illustrative quotations.
Priority topics for group education sessions. Based on patients’ and caregivers’ detailed feedback about curriculum topics, the research team identified 5 high-priority topics for group education sessions. Patients and expressed the greatest enthusiasm for learning about (1) nutrition, (2) physical activity, (3) improving self-management consistency and navigating diabetes-related interactions with (4) families and (5) peers. Participants were also supportive of topics on diabetes education, learning about diabetes medication options, stress management, and transition to adult care, but they viewed this as relatively less important and sometimes more appropriate to be addressed individually with clinicians. Each high-priority group education topic is described in the following.
Regarding “food and health,” participants were interested in learning how to approach eating when living with T2DM. Participants recommended answering questions about nutrition, facilitating a discussion of the emotional challenges of navigating food choices, and providing caregivers with advice about what food to serve and finding affordable nutritious options. Youth suggested integrating activities in the session like cooking a recipe together, practicing carbohydrate counting based on restaurant menus, or choosing items from a real-life buffet to build a healthy plate of food.
Concerning “physical activity and health,” participants wanted to learn how exercise or “movement” could improve health. Early adolescents and mid adolescents supported including actual physical activities in the session, such as volleyball, soccer, or yoga. Young adults emphasized teaching patients to fit exercise into their routines (e.g., “Oh, let me take my dog for a walk or walk around with friends at the mall.”). Caregivers indicated the educational session could motivate youth to engage in more exercise, and they also wanted to learn skills for encouraging their children to exercise more in daily life.
Regarding the topic of “consistency with diabetes management skills,” participants were interested in learning how to stay on track with diabetes care activities. Both patients and caregivers indicated it was a common challenge to persist and follow through with tasks like checking blood sugar, counting carbohydrates, taking medications, and adhering to nutrition and exercise recommendations. Participants suggested that educational sessions could give patients an opportunity to “get used” to the many tasks they would have to complete and learn about techniques that could help increase their consistency, such as using “pillboxes” or scheduling tasks effectively within busy schedules.
In addition to nutrition, physical activity, and consistency with self-management, participants were most enthusiastic about sessions focused on the interpersonal aspects of living with T2DM. Participants indicated a topic focused on “navigating family” would be helpful. Specifically, young adults and caregivers suggested facilitating a discussion of how siblings, parents, grandparents, and other family members impact youths’ health and teaching skills for coping with difficult family dynamics. Caregivers were interested in learning how to overcome conflict about diabetes management with their children. Furthermore, both youth and caregivers recommended developing a session on “navigating peers.” They reported youth often faced bullying about their weight and T2DM and had many fears about disclosing their diagnosis but also would benefit from support from trusted friends. Most patients thought this particular session should be delivered in gender-specific groups because the social challenges differed for young women and men. Caregivers reported the group education could also function as a type of support group for youth to understand they were not alone.
In this qualitative focus group study, youth with T2DM and their caregivers perceived many benefits of an SMA model, including connection, learning, and motivation. However, the enthusiasm for participation was strongest among older adolescents, young adults, and caregivers, with more hesitation about joining a group-based clinic among early adolescents. Study participants described younger teens as being more anxious and young adults as having to combat diabetes stigma to join an SMA clinic. Patients and caregivers recommended that the clinic be offered at convenient times for families and that accessibility issues (eg, language needs, childcare) be addressed. Participants also recommended tailoring educational topics based on patient characteristics (eg, time since diagnosis, gender).
The results of this study broadly supported the adaptation of an SMA model for youth with T2DM. However, the results also highlighted how barriers such as social anxiety, stigma, and the busy demands of youths’ and caregivers’ schedules could make an SMA challenging to implement. The first barrier, social anxiety, is very prevalent in early adolescence and tends to decrease by young adulthood.31 Given the fact that appearance-related concerns place early adolescents at higher risk for social anxiety and can inhibit the development of positive peer relationships later on,32 youth with T2DM (who are more likely to be overweight or obese, a societally stigmatized body size) may be especially self-conscious about joining a group of same-age peers. Despite this barrier to entry, participating in a group intervention could help address social anxiety through exposure and social skill building and facilitate positive peer connections. Perhaps scaffolding youths’ participation in a group could address anxiety, such as beginning with fewer demands for speaking; allowing them to bring a support person, such as a caregiver, sibling, or friend; demystifying what to expect in the group; or coaching them on how to cope with anxiety or shyness when joining group sessions. The second barrier, diabetes and weight stigma, are widely recognized barriers to treatment and self-management.33,34 Group intervention might be an effective strategy for reducing stigma by normalizing a shared experience, but if stigma discourages patients from joining a group defined by diabetes, pre- SMA strategies such as individually focused psychoeducation or empowerment strategies and community-focused anti-stigma campaigns may be necessary.35 Finally, the barrier of a busy lifestyle is a common but difficult problem to solve. The families at CHLA, predominantly Latinx and working class, often work long hours and balance competing family responsibilities. Although the SMA does not necessarily demand more time than the standard medical model of care, because group-based activities are scheduled during typical clinic appointment times, patients and caregivers expressed concern about fitting these health care activities into their demanding lives. For the SMA to be a success, it may be necessary to offer appointments at nontraditional times, such as weekends, and to offer supports, such as childcare for siblings, during SMA clinics. A key challenge for adolescents developing diabetes self-management skills is learning to balance competing health-, academic-, and social-role-related responsibilities.36 Although competing responsibilities are a very real barrier, part of adolescent T2DM care should be supporting youth and families in developing strategies for engaging in health care even while navigating busy schedules and external stressors.
As a rapid qualitative study enrolling patients from a single site, the generalizability of results is limited. However, engaging patients and families in the design of a new SMA clinic at their own hospital allows for them to influence the curriculum and structure of the clinic with the aim of enhancing acceptability and utility of this new care approach to the specific patient population at CHLA. Other researchers, health care administrators, or clinicians may find useful insights in this study’s results to inform their own efforts, but they should also engage representatives of their own patient populations to identify their specific needs, barriers, and interests. The rapid assessment procedures provided a structured, efficient process for engaging youth and caregivers in the process of designing a new care model for implementation in a specific clinical setting, but this method is relatively new and may have limited trustworthiness in comparison to more traditional qualitative methods. By adhering to the procedures described by Hamilton,27 the team attempted to enhance rigor. However, in the next step of this implementation project, the team plans to establish a patient and family advisory board who can confirm or refine the results of the current study. Next steps include developing 2 prototype group education sessions with input from advisory boards and piloting the SMA clinic in a new research study. Ultimately, future research should use clinical trial and quality improvement methods to evaluate the feasibility and efficacy of SMAs for youth with T2DM. The group interviews were focused on eliciting feedback related to the SMA, but there may be other promising models for adolescent T2DM care that were not explored in the current study, such as multidisciplinary clinics37 or community-based, rather than hospital-based, interventions.38
The rates of youth-onset T2DM are increasing at a rapid rate, and the standard model of care has not been sufficiently effective to support patients in controlling their glycemia and preventing diabetes-related complications and distress. The SMA model is promising but has not yet been adapted for or tested with youth with T2DM. This study engaged patients and families in the planning of an SMA clinic for youth with T2DM and identified key recommendations for enhancing the appeal and addressing barriers to participation of a group-based care model. Adolescents, young adults, and their caregivers were interested in learning more about a range of self-management topics and provided feedback to guide the development of a health education curriculum that could be integrated into an SMA clinic.
This research was funded by the Saban Research Institute start-up fund.
Caitlin S. Sayegh https://orcid.org/0000-0002-2381-0669
Nancy Chang https://orcid.org/0000-0002-0149-4386
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From Division of Endocrinology, Children’s Hospital Los Angeles, Los Angeles, California (Dr Smith, Dr Chang, Dr Chao); Department of Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, California (Dr Sayegh, Dr Chang, Dr Chao); Division of General Pediatrics, Children’s Hospital Los Angeles, Los Angeles, California (Dr Sayegh); and Division of Adolescent and Young Adult Medicine, Children’s Hospital Los Angeles, Los Angeles, California (Dr Sayegh); Psychology Postdoctoral Fellowship, Children’s Hospital Los Angeles, Los Angeles, California (Dr. Carrera Diaz).
Corresponding Author:Caitlin S. Sayegh, Division of Adolescent and Young Adult Medicine, Children’s Hospital Los Angeles, 4650 Sunset Blvd., MS#2, Los Angeles, CA 90027, USA.Email: cssayegh@chla.usc.edu
