Diabetes Care Provider Perceptions Regarding Emerging Adults’ Diabetes Self-Management Influences and Patient-Provider Visit Interactions Within a Safety-Net Hospital

This qualitative study of HCPs was the first phase of a larger sequential study to develop a diabetes visit intake questionnaire designed to improve the care of EAWD at visits within a safety-net setting based on HCP interviews and EAWD focus groups. All research activities were approved by the Emory University Institutional Review Board, and administrative approval was obtained from the hospital system in which participants were employed. HCPs were recruited via convenience sampling from a diabetes care center in metropolitan Atlanta, GA, that provides comprehensive diabetes care in a safety-net health care system. This facility was selected because HCPs see a large number of people with diabetes and were likely to interact with EAWD at a greater frequency. Endocrinologists, diabetes nurse providers, and diabetes nurse educators providing outpatient diabetes care to EAWD were invited to participate in the study, as their roles in this facility offered the broadest perspective of EAWD. Endocrinologists and nurse diabetes educators were recruited via e-mail invitation. Nurse providers were recruited during a group informational session. Target recruitment was 10–12 participants based on prior research regarding sample sizes required to identify the majority of themes in qualitative studies but allowing for flexibility in that target number based on ongoing review of data for sufficient redundancy, consideration of the study aims, and a finite pool of HCPs within this single setting (20,21).

A semistructured interview guide was developed to assess HCPs’ perspectives on 1) factors influencing diabetes self-management of EAWD based on a simplified socioecological perspective of personal, social, and environmental influences (22) and 2) visit interactions with EAWD, including communication at visits. Key topics guiding interviews are presented in Supplementary Figure S1. Questions were adapted for EAWD based on prior work by study author K.K.M. to identify psychosocial factors relevant to patient care and visit interaction among emerging adults in prenatal care (23). To ensure relevance to HCPs’ interactions with EAWD, the interview guide was piloted with an endocrinologist at the diabetes center and revised with study team feedback. Interviews were conducted between October 2019 and January 2020 on the hospital campus. All interviews were conducted by the same individual on the research team. After written informed consent was obtained, interviews were held in person in participants’ private offices, audio- recorded, and transcribed verbatim.

Data analysis consisted of a six-step process of data organization/preparation, initial review of data, coding, description, representation, and interpretation (24). Both deductive and inductive coding were used to analyze interviews (25). Data were transcribed, reviewed, and imported into MAXQDA 2020 software (VERBI Software, Berlin, Germany). After the initial review of transcripts, conceptual categories broadly reflected by interview questions were used to organize transcript data for additional analysis. Multiple cycles of inductive coding were used to identify themes within this conceptual framework and to allow for identification of additional themes regarding HCPs’ perceptions of their interactions with EAWD. Coding was performed by author R.A.W. Codes and coding strategies were then presented to a second researcher (L.P.K.) for secondary review. Strategies used to facilitate data analysis and transparency included the use of memos and reflective notetaking throughout data collection and analysis to document observations and decision-making processes and to assist with transcript coding. A codebook was created to refine and organize codes. A record trail of iterative concept mapping and tables was used to identify, organize, and collapse codes throughout data analysis (26).

A total of 11 HCPs participated in interviews. Participants included five nurses providing care to a designated caseload of patients at the diabetes center, as well as four endocrinologists caring for patients at the center. The endocrinologists reported an average of 24 years (SD 17 years) in practice. Nurses reported an average of 15 years (SD 13 years) in practice. Two nurses serving as the hospital’s diabetes educators and providing group outpatient diabetes education classes and inpatient diabetes education also participated. Interviews lasted a mean of 45 minutes (range 20–83 minutes).

HCPs were asked about and described their perceptions regarding factors influencing engagement of EAWD in diabetes self-management behaviors. Using the socio ecological perspective, these influences were categorized into intrapersonal, interpersonal, and structural factors. Self-management influences are presented briefly below and described further in Table 1, along with exemplary quotes. HCP were also asked to describe their interactions with EAWD at visits. HCPs’ descriptions of these interactions included four major topics of focus: engagement of EAWD in diabetes care, goals of EAWD and HCPs at visits, visit productivity, and strategies for engaging EAWD in diabetes management. Visit interaction topics are presented in the narrative below.

HCPs identified a variety of intrapersonal, interpersonal, and structural factors perceived to influence the self-management of EAWD. Intrapersonal influences were subcategorized into Mental Health and Emotional Burden and Perception of Risk as a Young Adult. Interpersonal factors included Busy Lives and Multiple Responsibilities and Social Norms and Activities of EAWD. Structural factors included Access to Resources, Technology, and Health Care “Adulting” and a New Environment. Busy Lives and Multiple Responsibilities—especially work (n = 11) and school (n = 7)—and Access to Resources were the most frequently cited influences on self-management for EAWD. HCPs’ observations also illustrated how intrapersonal, interpersonal, and structural barriers acted synergistically to complicate diabetes self-management, particularly with regard to the lack of access to appropriate resources (e.g., healthy food options, tailored medications/monitoring, and income) on intrapersonal and interpersonal barriers.

Engagement was an overriding theme among HCPs when discussing their perceptions of EAWD. Most HCPs (n = 9) felt that the level of engagement in diabetes management often distinguished EAWD from older people with diabetes. Diabetes clinic nurses, especially, observed that EAWD may not be as engaged in managing diabetes during visits or in taking ownership for self-management outside of visits. As one put it, “I feel like my young adult patients are more in a hurry to get in and out of here. I don’t know if it’s apathy or sometimes if they don’t understand how important it is. But I feel like, sometimes, the older patients care a little bit more. The younger patients are always on their phone and give yes-and-no answers instead of big explanations” (HCP #3).

Two themes were identified related to HCPs’ perceptions of goals for diabetes care visits. Those included perceptions of goals of EAWD and progress and a sense of accomplishment as a shared goal.

The majority of HCPs (n = 10) believed that a goal of many EAWD was to get in and out of the clinic quickly and return to their daily activities. Most HCPs (n = 8) thought EAWD came for visits primarily for supplies. As one said, “It’s not uncommon that you don’t feel that you have really touched them in [a way that will help them] . . . improve diabetes control because they are just there because they have an appointment. They just need the insulin, the prescription, but they are not really prone to listen to you, and you know that from the beginning” (HCP #11).

HCPs perceived that EAWD (n = 7) and HCPs (n = 8) alike often desire progress in diabetes management, which for HCPs included meeting A1C targets, observing incremental progress toward those goals during visits, or taking steps during visits to enable achieving progress. When discussing interactions at visits, many HCPs (n = 5) indicated that both HCPs and EAWD may feel frustrated by a lack of progress and stagnation in managing diabetes at and between visits.

Several HCPs described how they managed visits to ensure a sense of accomplishment for EAWD. For example, calling EAWD before appointments allowed nurses to adjust visits for maximum productivity. One HCP said, “I may tell them, ‘Let’s reschedule that appointment to a later time when you’ve had a chance to take your medicines and get things a little in control before you come back so [you] won’t be frustrated that you left here 2 weeks ago with a 400 [mg/dL] blood sugar, you still haven’t picked up your medicines, and when you come in 4 weeks, it’s still going to be 400 [mg/dL]. So, you won’t be frustrated, [and] I won’t be frustrated’” (HCP #1).

HCPs described visit productivity related to three themes. Two themes were related to the level of engagement of EAWD at visits: showing up matters and showing up is not enough. A third theme related to visit productivity was that relationships and understanding matter.

Several HCPs (n = 6) commented on the importance and significance of EAWD attending appointments, acknowledging that showing up is often more difficult and requires additional motivation and organization, especially given the social roles and responsibilities of EAWD. One HCP observed, “I believe the younger adults miss more appointments than the older adults. What happens if your kids are sick or you have so many things going on?” (HCP #11). However, when EAWD show up, HCPs can tailor management and help them navigate the health care system. One HCP said, “It’s the first step. You have the resources. [Now you are not only] . . . just going by symptoms of how you feel, but now we have numbers because we are watching your A1C [and] we are looking at your blood sugars. The doctors might draw more labs. So, you are just getting a little bit better care” (HCP #9).

Nevertheless, HCPs also believed that showing up was not enough to maximize diabetes care visits. They described visits as a necessary opportunity for engaging EAWD in assessment for both medical decision-making and guidance.

For all HCPs, assessment data (whether from the laboratory, from a blood glucose meter, or self-reported by the EAWD) allowed HCPs to make informed medical decisions and to engage in problem-solving around self-management. All nurses observed that EAWD may not bring their meter and blood glucose logs. As one put it, “They may come in with no numbers to show me, and then they’d tell me about the times when they’re experiencing things. But if you don’t have anything to show us, then the doctor doesn’t have . . . an accurate way to adjust your medications. So, I kind of feel like sometimes it’s not pointless, but it’s not good that you don’t come in with any information for us, because how can we help you if you’re not keeping the record of your numbers?” (HCP #3).

For the majority of HCPs (n = 9), the difference between productive and less productive visits depended on the engagement of EAWD at the visits. Productive visits were frequently defined by the level of engagement, in addition to a sense of progress. Less productive visits with EAWD were all defined by a lack of active engagement. Active engagement included EAWD actively processing information and actively participating in conversations. As one HCP described, “I like it when I feel like I am not just talking at them but that they are actually involved in it, and they are playing it back and figuring out ways . . . they are going to balance it all out in their day-to-day life” (HCP #9). Even active resistance to change during a visit was appreciated over nonengagement. One HCP said, “I think when patients are like, ‘Okay, all right. Okay, fine.’ Like, you tell them whatever, and they don’t want to talk. I’m okay even with arguing because that means you are somewhat engaged. I think a bad visit is when [I hear], ‘All right, okay,’ [and] nothing [else]” (HCP #7).

HCPs (n = 8) often observed that EAWD did not voluntarily share information, although HCPs described the importance of querying EAWD for information to identify barriers, and particularly those related to problems with glycemic control (n = 9). As one HCP put it, “I need feedback in order to tell them what to do moving forward, how to make changes, how to improve. Without knowing where they stand, it’s kind of hard to help them improve the situation” (HCP #4). The more accurate and granular the information provided, the more confident the HCPs felt in being able to provide useful guidance.

HCPs (n = 9) described the value of building a therapeutic relationship with EAWD. Listening to and hearing EAWD were described as vital to addressing the anxieties, frustrations, and fears these patients may bring to visits. A therapeutic relationship meant understanding the individual’s past experiences, present situation, and goals. Many expressed empathy for the challenges of living with diabetes as a young adult and acknowledged the importance of validation and understanding. As one noted, “It’s an interesting thing because sometimes you want to scold them, [and] sometimes you want to hug them and make them understand that, ‘Okay. I feel you. I know what you’re going through’” (HCP #5). Several HCPs (n = 6) observed that EAWD often fear judgment and needed their HCP to provide nonjudgmental care.

HCPs also noted that continuity (i.e., an ongoing relationship) with an HCP furthers the relationship and allows HCPs to better individualize care, motivate EAWD, and make interactions more productive. One said, “And I think that really does help if you [the patient] are not retelling the story every single time; I think that’s part of breaking that barrier because you have to repeat yourself every time. It’s frustrating. You don’t feel like you are getting anywhere” (HCP #10). Diabetes center staff had started making phone calls between visits, and one HCP reflected positively on this outreach, saying, “It’s really been helping. They are very thankful, grateful, that you did call them. They are appreciative. [They say], ‘Oh, well thank you for calling me [and] checking up on me’” (HCP #1).

In describing their interactions with EAWD and information exchange during visits, all HCPs reflected on their role beyond the performance of standard visit procedures, and especially their role as a facilitator of self-management for EAWD. Several different approaches were identified in HCPs’ descriptions of visits with EAWD. Table 2 summarizes different strategies they described for engaging EAWD in self-management and presents exemplar quotes representing the use of these strategies. Although most HCPs had distinct overall styles for approaching self-management guidance, most described using a combination of strategies in their interactions with EAWD.

In this exploration of the HCPs’ perceptions of caring for EAWD within a safety-net health care setting, HCPs observed that engagement in diabetes self-management often represented a distinguishing difference between EAWD and older people with diabetes. Emotional burden, multiple responsibilities such as work and school, limited access to resources, and challenges in adapting to an adult health care setting were identified as frequent barriers to self-management for EAWD. HCPs also viewed diabetes care visits with EAWD as an opportunity to improve their diabetes management through the use of strategies to identify and address barriers to self-management. Yet, HCPs acknowledged the need for active engagement on the part of EAWD and for cultivation of the patient-HCP relationship to provide the most appropriate care for EAWD during visits.

In a multilevel framework for engagement, patient engagement has been defined as “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system . . . to improve health and health care” (27). In this study, HCPs described engagement at the patient level in terms of EAWD participating in diabetes care activities and in information processing and exchange at visits with a view that these actions facilitate diabetes care and health outcomes. Evidence that EAWD may not be as engaged in daily diabetes self-management tasks or in regular clinic attendance for routine diabetes care has been presented in surveys of EAWD but not necessarily corroborated by HCPs themselves (7,28). This study suggests that HCPs in a safety-net setting also perceive lack of engagement as a challenge especially pertinent to EAWD.

Yet, importantly, when describing self-management influences, HCPs observed that lack of active engagement may not be an entirely personal decision for EAWD, who may be confronting many social and structural factors that hinder engagement at and between visits. Every HCP in this study acknowledged the broader context of both interpersonal barriers such as balancing work and family and structural barriers such as a lack of insurance, limited finances, or difficulty navigating the complex health care system in which self-management occurred. In a study of younger, lower-income women with gestational diabetes (29), HCPs observed that patients’ inability to effect change given these barriers may lead to further disengagement in care, a reflection echoed by the HCPs in this study. Moreover, the perceptions of HCPs in this study align in many respects with the views of EAWD; they, too, have described how diabetes fatigue and burnout, lack of time, and multiple responsibilities hinder diabetes self-management (16,17,30). This concordance indicates that HCPs and EAWD have some degree of shared perception that reflects an interdependent socioecological context of intrapersonal, social, and structural barriers to engagement in care.

Despite revealing a shared understanding of several barriers to self-management, the study findings suggest that, although HCPs recognize the roles of effective communication and a strong patient-provider relationship in diabetes management for EAWD, these conditions may not always be optimal. HCPs reported relying on information collected from EAWD to optimize care. They needed contextualized and open communication but reported not always being fully informed of pertinent life context issues of EAWD. HCPs here and elsewhere have reported that patients may not always share information, either unintentionally or deliberately, because of a fear of being judged (29,31).

For EAWD, too, a positive and trusting relationship with their HCP and continuity of care are important, yet they describe challenges engaging in open discussion with HCPs (13,15,17,32). For example, a desire among EAWD to prioritize certain topics during their limited clinic time may be an influencing factor in information exchange (17). In a study of uninsured EAWD, despite EAWD having a high number of psychosocial stressors, HCPs were unaware of many of these stressors (33). Better assessment and communication strategies may therefore be needed to provide appropriate care to EAWD, especially within safety-net settings.

With regard to self-management guidance during communication at diabetes visits, some research indicates that HCPs regularly offer such guidance as a component of diabetes care, although the extent to which this occurs may vary (34). In this study, HCPs frequently described their role in encouraging EAWD in diabetes self-management and gave additional insight into strategies they used to engage EAWD. HCPs detailed offering not just informational support but also affective and cognitive support (through reframing and problem-solving strategies). Given the relationship of adaptive coping skills and outcomes in EAWD and the call for HCPs to work with EAWD to identify more individualized, short-term motivators for realistic self-management practices, these communication strategies may be particularly appropriate (35–37). Moreover, affective strategies such as reframing diabetes self-management may be useful given that EAWD report the need for encouragement from HCPs and experience a high psychosocial burden associated with diabetes (7,9). Problem-solving and adaptive coping skills have also been associated with better diabetes outcomes among EAWD, a population that may still be maturing with regard to executive function skills (35,38,39). Further investigation of these various communication strategies could be instructional in guiding both individual HCPs and multidisciplinary teams in caring for EAWD.

With respect to visit goals, HCPs expressed that both they and their patients who are EAWD desire progress. However, EAWD and HCPs may conceive different definitions of progress, which require alignment. For example, HCPs often evaluate progress based on biometric outcomes and recommend tighter glycemic management for younger adults, with an understanding that this goal can prevent complications later. In contrast, EAWD report a need and desire to evaluate progress based on more individualized goals and nonnumerical standards adapted to their life situation (17). Proposed shifts from more paternalistic approaches to working alliances with patients may be a more effective approach to bridging such differences in perspective and facilitating care for EAWD (40). Moreover, “person-centered care” has been distinguished from “patient-centered care” in that person-centered care recognizes individual goals of a meaningful life beyond the metrics of functional living (41). Although patient-centered care is now recognized as integral to diabetes care practices that include medication selection, glycemic targets, and diabetes education (8,42–44), for EAWD especially, an expanded conceptualization of person-centered may be particularly salient, and whole-person approaches such as life coaching may be useful in facilitating such care (45).

HCPs’ recognition of the complex interactions between unmet resource needs and life challenges of EAWD within this study further reflects that facilitation of care may also depend on resources and system structures available to EAWD and HCPs, particularly for EAWD in safety-net care settings. Even interventions specifically designed for socioeconomically disadvantaged EAWD may underestimate the role of resource barriers to diabetes self-management (46). Given some of these challenges, an adaptive, multilevel, multifaceted approach may improve diabetes management and engagement on the part of EAWD. For example, flexible appointment times offered within a short-term time frame and virtual or telephone contact between visits could better adapt to the busy, more rigid, and less predictable work/life schedules of EAWD and help to ensure continuity of care. EAWD may also require additional support systems for navigating unfamiliar health care systems and accessing resources. For socioeconomically disadvantaged EAWD, these support systems may be even more crucial (47).

Although this study offers a better understanding of the views of HCPs working in a safety-net care facility regarding their patients who are EAWD, the findings may not represent the views and experiences of all diabetes HCPs. Interviews were limited to available participants within one facility, and additional interviews may have led to expansion and refinement of study findings.

Although prior literature suggests that the views of these HCPs are similar in some respects to the views of EAWD regarding self-management challenges, these views represent only a partial perspective on diabetes management by EAWD and require follow-up in other settings and among other stakeholders interacting with EAWD in safety-net settings, as well as EAWD themselves, who may have different responses and insights into the same issues. Other providers with key roles in diabetes care such as dietitians, pharmacists, and social workers were not included in this study and may offer additional insight.

These findings were limited to self-report, and HCPs’ views may be influenced by particularly salient encounters with EAWD. Observation of encounters between EAWD and HCPs may be useful to confirm and elaborate on the nature of HCPs’ interactions with EAWD, especially in comparison with HCPs’ interactions with older adults with diabetes. Additionally, although this study did identify social and structural determinants of self-management that serve as facilitators (e.g., technology) and barriers (e.g., limited access to resources and difficulty navigating health care systems), the study was exploratory and focused especially on interpersonal communication at visits. A systematic investigation focused on social and structural determinants of self-management would provide a more detailed understanding of these barriers, particularly given the patient population under study.

HCPs caring for EAWD in adult care safety-net settings offer insight into the needs of EAWD within such settings. HCPs in this study observed that many intrapersonal, interpersonal, and structural barriers affect self-management for EAWD, including their roles, priorities, and resource limitations. HCPs value communication with their patients who are EAWD, particularly because it allows for better decision-making regarding care of and the provision of self-management guidance to these patients. Diabetes requires a large degree of patient engagement, and HCPs acknowledge that engagement for EAWD is often challenging. However, interventions tailored to the self-management barriers of EAWD and interventions that facilitate improved communication between EAWD and HCPs at visits may offer an opportunity to optimize diabetes management during this life stage and to positively affect health care behaviors and quality of life beyond young adulthood.

The authors thank Breanna Berry, MPH, of the Emory School of Public Health for assistance with data transcription.

No potential conflicts of interest relevant to this article were reported.

R.A.W. wrote the manuscript and researched data. S.H. and K.K.M. contributed to the discussion and reviewed and edited the manuscript. L.P.K. researched data, contributed to the discussion, and reviewed and edited the manuscript. R.A.W. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.