At the outset of the coronavirus disease 2019 (COVID-19) pandemic, health care systems rapidly implemented telehealth services to maintain continuity of type 1 diabetes care. Youth of color are more likely to have suboptimal glycemic control and may benefit most from efforts to ensure continuity of care. However, research examining the perspectives of families of youth of color regarding telehealth for pediatric type 1 diabetes care is limited. We gathered perspectives from youth of color, their caregivers, and health care providers (HCPs) on telehealth for type 1 diabetes care during COVID-19.
Fifty participants (22 caregivers, 19 youth, and nine HCPs) completed semi-structured interviews conducted in English (n = 44) or Spanish (n = 6). Transcripts containing mentions of telehealth (n = 33) were included for qualitative analysis to extract themes pertaining to perceptions of type 1 diabetes care and telehealth use during COVID-19.
Themes related to perceptions, feasibility, and quality of telehealth diabetes care were obtained. Most families had positive perceptions of telehealth. Families and HCPs described logistical and technical challenges and noted the potential for disparities in telehealth access and use. Furthermore, caregivers and HCPs felt that the lack of in-person interaction and limited access to clinical data affected the quality of care.
Families of youth of color with type 1 diabetes mostly had positive perceptions of telehealth but also identified issues with feasibility and quality of care. Our findings highlight a need for interventions promoting equal access to telehealth and quality care for all youth with type 1 diabetes to minimize disruptions in care.
The novel coronavirus disease 2019 (COVID-19) threatened the health and well-being of all families, with a disproportionate impact on families of children of color (1,2). In response to COVID-19, health care systems restricted and/or postponed in-person clinical appointments, with many rapidly implementing telehealth, including virtual, remote, and telemedicine services (3,4). These health care system–based disruptions in diabetes care can present a challenge to youth with type 1 diabetes and especially for Black and Hispanic youth, as they are more likely to miss appointments and have suboptimal glycemic levels compared with White youth (5).
The effectiveness of telehealth-based care for diabetes management during COVID-19 is promising given the availability of sharing electronic data from advanced diabetes technology devices (continuous glucose monitoring [CGM] systems and insulin pumps) (6,7). Indeed, research conducted before the pandemic found that the use of telehealth in type 1 diabetes management resulted in improvements or no change in A1C levels over the course of 1 year (8,9) and that patients were generally satisfied with telehealth, although some reported technical issues (9,10). Unfortunately, a successful telehealth encounter requires reliable Internet access, a device with audio and video capabilities, and digital literacy, which are common challenges for communities of color that are disproportionately affected by the digital divide (11–13).
From the available studies conducted during the COVID-19 pandemic, it appears that attendance rates among patients with type 1 diabetes were similar for telehealth and in-person appointments, demonstrating engagement with telehealth (14). Two pilot studies also found that people with type 1 diabetes who attended telehealth visits during the pandemic showed improvements in glycemia, signaling potential effectiveness (15,16). However, survey data collected during the pandemic revealed a range of perspectives regarding acceptability, feasibility, and preference for telehealth (3,17–20), suggesting that more research is needed to understand families’ lived experiences of telehealth during COVID-19.
Before the pandemic, adults with type 1 diabetes expressed concern in qualitative interviews that, over time, telehealth would undermine their expertise in managing their diabetes by shifting control to their health care professionals (HCPs) (21). They reported problems electronically transmitting clinical data and receiving meaningful feedback because of limited staff time and asynchronous support, and they emphasized face-to-face contact as being key to quality care (21). This study on adults provided some insight into patients’ perceptions of telehealth for type 1 diabetes care, but a pediatric perspective is still lacking. Pediatric populations have additional factors to consider when using telehealth (e.g., youth-caregiver dynamics and balancing of work and school schedules). More importantly, there is a need to document the lived experiences of youth of color with type 1 diabetes, a group at greater risk of suboptimal health outcomes (5) and disproportionally affected by the digital divide (11–13). Such information may improve the quality of pediatric diabetes care delivered through telehealth as the pandemic persists.
Pre-pandemic, diabetes HCPs felt that telehealth was generally acceptable (22,23) and had clinical benefits (e.g., in monitoring treatment progress and fostering provider-patient relationships) (24). However, they also identified several concerns such as a lack of personal contact and families being unfamiliar with technology (24). Despite these findings, it is imperative to obtain HCPs’ perceptions to gain insight into unique facilitators of and barriers to delivering pediatric type 1 diabetes care through telehealth during COVID-19. To address these gaps in the literature, the aim of the current study was to gather perspectives from youth of color, their caregivers, and HCPs on telehealth for type 1 diabetes care during COVID-19.
Research Design and Methods
This study was conducted as part of a larger qualitative project approved by the Nemours institutional review board (IRB #1562263). This larger project examined facilitators of and barriers to advanced diabetes technology use for type 1 diabetes among families of color, initiated in June 2020. Consistent with best-practice guidelines for health disparities research (25), the larger study included a stakeholder advisory board composed of two youth of color with type 1 diabetes and three caregivers who contributed to the research question, recruitment procedures, and interview guides and reviewed the final qualitative findings.
Youth of color with type 1 diabetes between the ages of 12 and 19 years who had been diagnosed at least 12 months before recruitment, did not identify as non-Hispanic White, and primarily spoke English or Spanish were eligible to participate. Caregivers of eligible youth were also invited to participate regardless of their race and ethnicity. Eligible families were identified from electronic health records (EHRs) across two endocrinology clinics in a multistate pediatric health system located along the East Coast of the United States. Purposive sampling was used to obtain diversity with regard to ethnicity, primary language, and diabetes technology use (dichotomized into current use versus never/previously used [i.e., did not use in the past 3 months]). Youth and caregivers were able to participate individually. Pediatric endocrinologists and advanced practice registered nurses (APRNs) who provided direct clinical care to youth with type 1 diabetes in these same two clinics were also eligible to participate.
Eligible families and HCPs were recruited via e-mail with a message describing the purpose of the larger study. Research team members used text messages, phone calls, and e-mail messages to follow up with potential participants who did not respond. Research team members scheduled a study visit with families and HCPs who expressed interest in the study. At the start of the visit, families completed electronic informed consent and assent forms hosted in the REDCap (Research Electronic Data Capture) online platform (26,27). To protect confidentiality, HCPs could waive providing their signature as documentation of consent.
Participants completed a demographics form followed by a semi-structured phone interview conducted by trained interviewers. Youth and caregivers from Spanish-speaking families were given the option to complete research procedures in Spanish or English; all caregivers (n = 6) completed interviews in Spanish, while all youth (n = 4) completed interviews in English. All interviews were audio-recorded and transcribed using a third-party transcription service. Youth and caregivers were paid $30 for completing the study. HCPs received a raffle entry for one of four $30 gift cards.
The demographic forms assessed race, ethnicity, age, and sex. Additionally, caregivers and youth reported on their education level and primary spoken language. EHR data provided youths’ most recent A1C result, duration of type 1 diabetes, and insurance type (e.g., public or private). HCPs indicated their job title/role, years of providing type 1 diabetes clinical care, and whether they provided services in languages other than English.
Three semi-structured interview guides were created (for youth, caregivers, and HCPs). Interview guides were originally developed to assess families’ perceptions of facilitators of and barriers to diabetes technology use. At the outset of the COVID-19 pandemic, questions were added to ask youth and caregivers who had a telehealth visit to share their perspectives on telehealth, whereas HCPs were asked how the pandemic affected their clinical care (Table 1). Youth and caregiver interview guides were developed in English and then translated and certified in Spanish. Three bilingual stakeholders (one youth and two caregivers) also reviewed the Spanish interview guides.
Spanish-language interviews were translated into English for coding purposes. All transcripts were reviewed for accuracy before coding. Qualitative analysis of all transcripts was conducted using Dedoose, 9.0.17 (28). Three members of the research team (C.T., A.P.R., and P.T.E.) iteratively developed the codebook by examining transcripts line by line and identifying key words and phrases. All transcripts were coded by a two-person coding team (C.T. and P.T.E.). The coding team independently coded transcripts and met to review, discuss, and resolve coding inconsistencies and revise coding criteria (29). Another research team member experienced in qualitative research methods (M.A.A.) was consulted as needed to help resolve inconsistencies. A phenomenological approach (30) was used to extract relevant themes regarding perceptions of telehealth for type 1 diabetes care during COVID-19. The coding team met multiple times to develop and revise the emerging themes using a constant comparative approach, comparing and contrasting exemplars within the data to formulate the final themes.
Reflexivity is the process through which researchers acknowledge and disclose how their own background and worldview influence their research (31). The racial and ethnic backgrounds of the authors are somewhat diverse and include non-Hispanic White (M.A.A., S.R.P., M.C., and P.T.E.), non-Hispanic Black/African American (C.T.), and Hispanic White (A.P.R.). All authors have graduate-level education in psychology, medicine, or public health. None of the authors have type 1 diabetes, but they do have experience providing clinical care or conducting research with youth with type 1 diabetes and their families. The authors with experience providing clinical care have used telehealth when working with youth with type 1 diabetes. The authors recognize that their professional and personal background may affect their approach to answering the research questions posed in this article, the information participants may have disclosed during interviews, and their interpretation of the findings. The research team worked to develop culturally sensitive research methods and had regular discussions to ensure that the study was guided by their cultural knowledge and expertise.
A total of 107 families and 16 HCPs were invited to participate: 72 families and one HCP did not respond; 13 families and six HCPs declined; and 22 families (22 caregivers and 19 youth; 21% of the total approached) and nine HCPs (56% of the total approached) enrolled, resulting in a final sample of 50 participants. All 50 transcripts were reviewed, and those that did not mention telehealth (n = 17) were excluded. The sample for the current analyses, therefore, consists of 33 transcripts from 16 caregivers, eight youth, and nine HCPs. Participant demographics and descriptives are presented in Table 2.
Three major themes capturing participant perspectives on telehealth for pediatric type 1 diabetes care during COVID-19 were distilled from the data. They captured comments about 1) perceptions of telehealth, 2) feasibility of telehealth, and 3) quality of telehealth care. Details and illustrative quotes are provided below.
Theme 1: Perceptions of Telehealth
Seven youth (87.5%) and 10 caregivers (62.5%) had positive perceptions of telehealth. One caregiver (38-year-old Hispanic female) liked the convenience of having telehealth appointments, saying, “Sometimes, when we are there [in-person], we were there for 2 or 3 hours . . . . She’s here in the house. She does her lunch, and she can continue to have the appointment.” One youth (12-year-old multiracial male) stated that attending telehealth appointments made him feel better. When asked to elaborate, he expressed how virtual appointments would “probably just [protect] the health of everybody who would have been there in person.” A few caregivers and youth were initially unsure about telehealth, describing video calls as “strange,” “different,” or creating feelings of “anxiety.” However, they tended to feel better about the experience afterward.
Conversely, one youth (12.5%) and six caregivers (37.5%) had negative perceptions about telehealth. The one youth (15-year-old Hispanic male from a Spanish-speaking family) disliked the length of his appointment, stating that “it took longer than it would have taken in person.” One caregiver (38-year-old Hispanic female) felt that telehealth was not suitable for her child because “he’s more of a type of patient that should be seen—not somebody that should do a telehealth appointment.” Another caregiver (57-year-old Non-Hispanic Black female) decided against attending telehealth appointments because, she said, “I didn’t feel comfortable with doing [it] on the computer. We need to be able to talk to [the HCP] and not just [be] on the computer.” In sum, despite some notable concerns, most families found telehealth to be an acceptable way to receive type 1 diabetes care.
Theme 2: Feasibility of Telehealth
Most families and HCPs discussed potential feasibility issues with delivering type 1 diabetes care through telehealth. Two subthemes emerged related to A) logistical and technical barriers and B) disparities in access and delivery of telehealth care.
Subtheme 2A: Logistical and Technical Barriers
Logistical and technical barriers reduced the feasibility of delivering type 1 diabetes care through telehealth. Some youth and caregivers experienced scheduling issues with their telehealth appointments. One caregiver (46-year-old Non-Hispanic Black male) detailed difficulties in arranging his child’s telehealth appointments, saying, “It’s just been back and forth over the last couple of months . . . once I went back to work was when they just started seeing him. And then, my schedule’s from 7:00 to 6:00. So, it’s like, trying to work through my schedule at a new job, getting through a probation period. It was just hard to get him to the appointments.” Some youth and caregivers also described technical issues. One youth (13-year-old Hispanic male) said, “[Telehealth is] all right. But, if the Internet cuts out, you have to start all over.”
Obtaining type 1 diabetes–related clinical laboratory test results for telehealth appointments raised additional logistical concerns. Some caregivers felt that completing extra steps for testing or not having laboratory test results such as A1C values were limitations. For example, one caregiver (47-year-old Hispanic female) shared her concerns about whether the laboratory test results would be processed and communicated to the type 1 diabetes care team in time for the appointment, saying, “Usually, when she was seeing the doctor in person, they took her blood sugar right in the office . . . and then [got] her A1C and everything. But now, they had to wait for a lab. So, are they gonna have it in time? Are they gonna be able to give her the information she needs?” Overall, logistical and technical issues raised concerns with receiving type 1 diabetes care through telehealth among families of youth of color.
Subtheme 2B: Disparities in Access and Delivery of Telehealth Care
Potential disparities in accessing and delivering telehealth services for type 1 diabetes care were further complicated by COVID-19. A few HCPs mentioned potential racial and ethnic disparities in telehealth access and use. One HCP (APRN, female, 6–10 years of diabetes clinical experience) detailed technical issues that Spanish-speaking families faced and interpreters having to intervene and troubleshoot.
“I noticed . . . with our Spanish-speaking population that they were having trouble signing in for the visits sometimes. I was able to contact one of our . . . interpreters after I noticed that that was happening, and they were reaching out to them by phone to help them set things up. That helps, but that’s just an example of how minority groups definitely had a harder time with things when we had to do telemedicine.”
Other sociodemographic factors were identified that could contribute to disparities in telehealth access. As one HCP (endocrinologist, female, 6–10 years of diabetes clinical experience) stated, there are “examples of patients who are of certain religious backgrounds who don’t employ the type of technology that’s required to have telemedicine visits, and so they’ve been impacted negatively.” Financial hardships were exacerbated by the pandemic and could affect families’ ability to attend appointments; for example, one caregiver (38-year-old Non-Hispanic Black female) described how she and her child missed telehealth appointments during the pandemic, saying, “Typically . . . we don’t miss appointments . . . . I just couldn’t afford this one with everything that kind of came up and me spending more money on food and things like that [due to COVID-19].”
Theme 3: Quality of Telehealth Care
Although one HCP (APRN, female, 6–10 years of diabetes clinical experience) noted that telehealth provided a more personal experience (“Just being on their home turf and more relaxed and showing me their pets and things like that—it was nicer and more personal and probably added to our relationship”), most HCPs and caregivers raised concerns about the quality of telehealth diabetes care because of the lack of in-person interactions. One caregiver (45-year-old Non-Hispanic Black female) shared that she canceled her child’s telehealth appointment and wanted to reschedule for an in-person visit. One HCP (endocrinologist, male, 6–10 years of diabetes clinical experience) also expressed concerns about limited multidisciplinary care, saying, “A lot of our kids need good strong psychology support. I think they’re doing a great job with telemedicine, but I don’t think it’s the same when you talk to someone on the phone versus in person.”
Most caregivers and HCPs also felt that the absence of physical examinations diminished the quality of diabetes care. One caregiver (54-year-old Hispanic male from a Spanish-speaking family) described telehealth as a professional experience, but said “the difference with [a] video call . . . is that . . . the doctor cannot do his physical examination . . ., which is the one that I think is important, especially for my child’s condition.” One HCP (APRN, female, 6–10 years of diabetes clinical experience) shared how physical exams shaped her perception of the quality of in-person versus telehealth visits, saying, “I think the care that I give when I’m doing a telemedicine visit is not as good as an in-person visit . . . because of not being able to examine the child . . . .”
Some HCPs felt that the inability to retrieve type 1 diabetes–specific data (e.g., glucose levels and A1C values) made telehealth less effective. As described by one HCP (APRN, female, 6–10 years of diabetes clinical experience), “I didn’t have access to their meters to physically go through . . . . They did not have A1Cs necessarily for me to be able to gauge how things were going, so that definitely made it tougher to have an effective visit.” However, a few HCPs believed that data from advanced diabetes technology devices improved the quality of diabetes care. One HCP (endocrinologist, female, 1–5 years of diabetes clinical experience) described how device downloads informed clinical care more than A1C, saying, “We weren’t able to do . . . a hemoglobin A1C, so that piece of information was missing when we saw them. But I don’t think that it impacted the way in which we were able to provide care significantly because . . . most of them downloaded data and sent it to us or sent logs.” In sum, many HCPs and families felt that care delivered via telehealth could be of lower quality; however, HCPs noted how advanced diabetes technology could help them deliver higher-quality care by telehealth.
Our findings suggest that most families of youth of color with type 1 diabetes, in the context of COVID-19, had positive perceptions of telehealth, although a few families reported minor concerns. These findings are mainly congruent with prior research (3,17–20) but extend the literature by identifying reasons why families of youth of color perceived telehealth positively (e.g., its usefulness and convenience). Importantly, our findings also point to reasons why families of youth of color may be uncertain about telehealth (e.g., poor patient fit and discomfort with technology). These reasons for uncertainty are amenable to intervention, and addressing such issues may help to minimize disruptions in care. For example, it may be helpful to assess families’ preferences for a mode of care delivery (i.e., telehealth vs. in-person visits) and level of comfort with telehealth technology before scheduling telehealth appointments to ensure that families receive care in their preferred way, when possible, and to identify families who would benefit from additional support (e.g., outreach from support staff) to successfully complete telehealth visits.
Interestingly, our data also suggest that some caregivers and HCPs in the sample felt that the absence of in-person contact and physical examinations diminished the quality of diabetes care, which is also consistent with previous research (32). Many aspects of the exam cannot be completed via telehealth (e.g., auscultation and checking for scars at injection sites), and the lack of in-person contact may hamper communication, which is essential to patient-provider relationships, treatment engagement, and satisfaction with care (33–35). Therefore, more research is needed to understand how physical examinations influence patient-provider relationships and to identify ways to promote patient-provider communication and relationships when care is delivered remotely.
Relatedly, results from this study highlight the need for equity-promoting interventions and initiatives. Although telehealth enabled continuity of care during the height of COVID-19, previous research (11–13) and this study suggest that telehealth could exacerbate disparities in health care access and delivery for families of color. Technical challenges were common, and digital literacy played a role, especially for non–English-speaking families. Furthermore, limited ability to share or access clinical data (e.g., blood glucose information and A1C values) eroded participants’ perceptions of the quality of care delivered through telehealth. Advanced diabetes technology devices such as CGM systems and insulin pumps could facilitate the sharing of clinical data for telehealth appointments (6,7); however, there are persistent racial and ethnic disparities in the use of diabetes technology (5). To ensure that telehealth reduces disruptions in care for all youth with type 1 diabetes, clinics and health care systems need to identify and remedy factors and processes that contribute to disparities in care.
The study’s strengths include its use of rigorous qualitative methods, a stakeholder advisory board, inclusion of both family and HCP perspectives, and a focus on families from historically under-represented racial/ethnic groups. However, study findings should be interpreted with the following limitations in mind. First, the primary aim of the larger study was not to assess telehealth, which limited the number and types of questions participants answered. Only youth of color with type 1 diabetes were recruited given the aims of the larger study, thereby precluding the ability to compare themes across racial/ethnic groups. Future research should sample both White and non-White youth with type 1 diabetes to examine whether racial/ethnic differences in perceptions of telehealth visits exist. Additionally, the study had a low recruitment rate, as only 21% of contacted families were enrolled; however, this was sufficient to achieve saturation, and purposive sampling allowed for greater representation in this sample. Characteristics of the coding team could affect how the data were coded and analyzed; however, the team was racially and ethnically diverse and worked closely with the advisory board to protect against any implicit biases. The study was conducted early in the pandemic and used a cross-sectional design, which precludes the examination of changes in perspectives over time. Finally, the sample was well-educated, the study was limited to two endocrinology clinics within the same pediatric health system, and the HCPs sampled were limited in terms of racial/ethnic diversity, all of which are factors that may limit generalizability.
Conclusion and Implications for Clinical Practice
Most families of youth of color with type 1 diabetes had positive perceptions of telehealth during COVID-19, although some families and HCPs identified issues related to feasibility and quality of care. Understanding families’ preferred modes for care delivery (e.g., in-person, telehealth, or hybrid) may help HCPs engage families of color in care (36). Health equity should also be proactively addressed to ensure equitable access to telehealth care. It is recommended that health care systems 1) examine whether disparities in telehealth access exist within their patient population, 2) develop ways to educate patients on how to navigate technology for telehealth visits, and 3) review structural processes to make appropriate technical and logistical changes to facilitate successful telehealth encounters (13). Results of this study also highlight limited access to clinical data as a gap in telehealth use. To mitigate this gap, HCPs should encourage more use of advanced diabetes technology among all youth, provide more opportunities for families to complete laboratory testing before telehealth appointments and assist as needed, and assess families’ individual needs to optimize the quality of their telehealth diabetes care.
The authors thank the youth and adult advisory boards for their assistance in developing this project, as well as the youth, caregivers, and HCPs for participating in this study. They also thank Tirzah Spencer, PhD (ThinkLive! Inc., Atlanta, GA), for help in refining the interview guides and Drs. Anthony Gannon and Daniel Doyle of the Division of Endocrinology at Nemours Children’s Hospital, Delaware, for their assistance with recruiting participants and developing interview guides.
This work was supported by an International Society for Pediatric and Adolescent Diabetes–JDRF research fellowship awarded to P.T.E.
Duality of Interest
No potential conflicts of interest relevant to this article were reported.
C.T. and P.T.E. conceptualized the study. C.T., A.P.R., and P.T.E. collected and coded the data. C.T., A.P.R., M.A.A., and P.T.E. helped to analyze the data. C.T. and P.T.E. drafted the manuscript. All authors revised the manuscript. P.T.E. 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.