Abstract
Purpose
The purpose of this study was to collect data from surveys and focus groups to describe the overall experiences and perceptions of racism of parents of non-Hispanic Black (NHB) children with diabetes.
Methods
A concurrent mixed-methods research design was utilized. Surveys (General Intake, Brief Hypervigilance Scale) were obtained, and 5 focus groups (4 type 1 diabetes, 1 type 2 diabetes) were conducted with parents of NHB children followed at an urban pediatric diabetes center. A focus group guide was developed, and transcripts were coded and analyzed by the research team.
Results
Forty-seven parents consented to participate in the study; 22 parents (47%) participated in 1 of 5 focus groups. Focus group participants were generally in good health and had higher education and income levels than nonparticipants. Hypervigilance (a heightened awareness to threat) was reported in parents, especially of those children with type 2 diabetes. Focus group themes related to experiences with diabetes management, including (1) communication with the diabetes team, (2) coping mechanisms, and (3) perceptions of medical racism.
Conclusions
Key insights that emerged from the study included the importance of communicating openly with the diabetes team, the inequitable provision of diabetes technology, a desire for NHB role models, and high levels of hypervigilance in the participants. Innovative approaches, including trauma-informed care focused on patient/caregiver and parent voice, can help to address the racial disparities in the treatment and outcomes of youth with diabetes.
Racial disparities in the treatment and outcomes of children with type 1 diabetes (T1DM) have been well described.1 -4 As diabetes technology has advanced, racial disparities in outcomes have widened. 5 In a study in a large urban diabetes center, continuous glucose monitoring was used by 31% of non-Hispanic Black (NHB) children compared to 51% of non-Hispanic White (NHW) children. 6 Insulin pump use was half as prevalent in NHB children after controlling for socioeconomic status. 7 Interventions have attempted to address pediatric diabetes disparities through intensive education, 8 text messaging, 9 home video visits, 10 and integration of community health workers, 11 but there has been only modest success in improving outcomes.
Racism is a key social determinant of health (SDOH) shown to impact diabetes care. There were significant associations between structural racism and higher A1C and blood pressure, worse self-care behaviors, lower standards of care, higher mortality, and more years of life lost among adults with diabetes. 12 Multiple SDOH, including systemic racism, were cited as barriers to diabetes management in children. 13 Commentaries in scientific journals have focused on the need to “flip the lens” to eliminate disparities, concentrating on the changes that are necessary in health care rather than blaming the patient for their lack of knowledge.5,8
Various studies have attempted to measure the impact of racism in society and in the health care system. Hypervigilance is one potentially measurable indicator of racism and refers to living in a state of psychological arousal to monitor and attempt to protect oneself from threats linked to potential experiences of discrimination. 14 Hypervigilance can be used as a coping mechanism for individuals experiencing racism in health care settings. 15 Data have shown that hypervigilance is more prevalent in the NHB population and is associated with poor mental and physical health. 16 Research questions that helped guide the study included the following:
Research Question 1: What are the experiences of parents of NHB children regarding communication with the diabetes health care team?
Research Question 2: How does racism impact the ability to manage diabetes?
The purpose of this study was to collect data from surveys and focus groups to describe the overall experiences and perceptions of racism of parents of NHB children with diabetes.
Methods
Research Design
This study used a concurrent mixed-methods research design 17 with the intention that quantitative and qualitative data would more fully explain the experiences of NHB families with a child with diabetes. A socio-ecological framework adapted from Lipman and Hawkes 5 (Figure 1) was used to guide the study. The socio-ecological model has 2 basic assumptions: (1) There are multiple levels of influence on health, from the interpersonal (micro) to the structural (macro), and (2) there is reciprocal causation between individual behaviors and the social environments. 18 The Institutional Review Board at Children’s Hospital of Philadelphia approved the study, and verbal consent was obtained from parents. The COREQ checklist for qualitative research reporting was used in the preparation of this report.
Socio-ecological framework adapted from Lipman and Hawkes. 5
Setting and Sample
The setting for participant recruitment was a large urban diabetes center that manages approximately 3000 children with T1DM or type 2 diabetes (T2DM). The care teams consisted of a physician, a nurse practitioner, a certified diabetes care and education specialist, a nutritionist, and a social worker. The research team conducted telephone outreach after identifying potential participants with an electronic health record query and screening the patient charts to confirm eligibility. To be included, participants were required to be a parent or legal guardian of an NHB child under age 18 years with a duration of T1DM or T2DM greater than 1 year. Parents were ineligible if they were not fluent in English, the child with diabetes no longer lived in the household, and/or the parent was a foster parent.
Surveys
Quantitative surveys were conducted first to collect demographics of the participants. The General Intake Survey was adapted from the Consumer Assessment of Healthcare Providers and Systems Clinician and Group Survey, child version 3.0, 19 and included questions related to demographics, self-reported health, diabetes technology use, communication with the diabetes team, and SDOH. 20
The Heightened Vigilance scale was developed to capture efforts to protect oneself from discrimination and minimize exposure. 21 In an attempt to further understand how the overall experiences of parents of NHB children with diabetes can impact the health care encounter, the 6-item Hypervigilance Scale (M = 3.60, SD = .92,), adapted from Williams, 22 was utilized. The scale is internally consistent (α = .77; original α = .72). 23 In evaluating the convergent validity, scores were found to be moderately related to total past-year posttraumatic stress disorder symptoms (r = .50, P < .001). 24 The items are rated on a Likert scale with options including 1 (very often), 2 (fairly often), 3 (not too often), 4 (hardly ever), and 5 (never). The scale has been used in studies assessing the influence of vigilance on health.23,25,26
Focus Group Interviews
A subset of the parents who completed the survey were able to participate in a focus group. The 60-minute sessions consisted of the moderator and participants. All focus group sessions were conducted via video call and audio recorded. No repeat interviews were done. Field notes were made after the focus groups. A focus group guide (available on request) was developed by Konquered Healthcare Solutions, LLC, an organization focused on diversity, equity, and inclusion. The moderator who conducted the focus group (KA) was a male social epidemiologist with PhD training and extensive experience in addressing health care disparities; this was disclosed to the participants. Five focus groups (FG1-FG5) were led by the Konquered team and were structured to include parents with similar diabetes management experience. Based on the prevalence of the type of diabetes in youth, 4 of the focus groups consisted of parents of NHB children with T1DM, and 1 of the focus groups included parents of NHB children with T2DM. Questions included the broad areas of (1) the child’s diabetes management and opportunities for improvements in the health care experience and (2) parents’ perceptions of racism in the diabetes care setting.
Data Analysis
Quantitative data were analyzed by the University of Pennsylvania Mixed Methods Research Lab (MMRL). Chi-square tests of independence were computed for income, education, gender, and employment status between the focus group participants and nonparticipants. A Welch’s 2-sample t test was conducted to test for differences in mean age between participants and nonparticipants. The hypervigilance survey data were analyzed by individual items scored from 1 to 5 (1 being most vigilant), and the total survey was scored from 6 to 36, with 6 being the highest level of hypervigilance.
The focus groups were transcribed verbatim by MMRL within 24 hours. Transcripts were not provided to participants. A codebook was developed by Konquered, and an integrative approach was used to refine the codebook. 27 Code definitions were refined through consensus, and transcripts were reviewed repeatedly to immerse the team in the data. Transcripts were coded and analyzed by KA (Konquered) and DPB (MMRL), who first established strong interrater reliability accordance scores (κ > 0.8) and then coded interviews independently. NVivo 12 was used to support analyses. 28 The research team met biweekly to debrief and discuss codes and patterns in the data and coding tree (Figure 2). Data saturation was discussed.
Coding tree for qualitative analysis of focus groups.
Research Team
The research team was racially diverse and included members of an organization focused on health care equity research (KAM, KA); research coordinators with expertise in mixed-methods design, qualitative research methods, and survey development (DPB, LA); program coordinators with experience in racial disparities research (YSW, TD, BR); and nursing faculty (THL, CJH) and pediatric endocrinologists (SMW, CPH) with experience in diabetes care and health disparities research.
Results
Demographics
Forty-seven parents consented to participate in the study and completed the demographic survey. Of those, 22 (47%) were able to attend a focus group (5 parents in FG1 and FG2; 4 parents in FG3, FG4, and FG5) and completed the other portions of the intake survey. The average duration of diabetes of their children was 4.4 years (1-12.9
Demographics of Parents: Those Who Participated in a Focus Group and Those Who Did Not Participate
Health and Communication
Most focus group participants rated themselves as having good or better on physical health (n = 18, 81%) and mental health (n = 20, 91%) on the intake survey. Almost all parents reported feeling neutral or comfortable participating in public discussions regarding their experiences (n = 21, 95%). Messaging through electronic medical records was the most common way parents communicated with their child’s doctors (n = 15, 68%). Most parents surveyed said they were comfortable communicating with their child’s providers (n = 20, 91%) and were engaged when communicating with them (n = 17, 77%).
Technology
The intake survey demonstrated that almost all parents reported viewing diabetes technology as beneficial to their child’s care (n = 21, 95%). However, over one quarter of parents surveyed reported that they were not presented with the option of an insulin pump (n = 6, 27%).
Social Needs
Participants reported social needs related to food and housing security, health care cost, access to childcare, reading health care information, and safety. Food insecurity and difficulty obtaining childcare were most common, reported by 18% of respondents (Table 2).
Identification of Social Needs in Focus Group Participants
Hypervigilance Scores
Participants’ scores on the Brief Hypervigilance Scale ranged from 6 (highest) to 26 (lowest) with a mean score of 14.9. In this sample, the highest level of hypervigilance was in parents of children with T2DM, with a mean score of 12.4. Most parents reported that they were careful to observe their surroundings (n = 20, 91%) and avoid certain social situations (n = 14, 64%) very often or often (Figure 3). Nearly half of the parents remarked that they think about problems they were likely to experience somewhat often (n = 10, 45%). Over one third of parents reported preparing for possible insults when they leave the home (n = 8, 36%), and the same proportion reported carefully considering their appearance to get good service or to avoid harassment (n = 8, 36%; Figures 3 and 4).
A component of hypervigilance in focus group participants: “Do you carefully observe what happens around you?”
A component of hypervigilance in focus group participants: “Do you carefully watch what you say and how you say it?”
Focus Group Themes
Communication with the diabetes team
Communication was defined as methods of connecting with the diabetes team and provider communication during diabetes visits. Families shared many positive aspects about communication with the diabetes team, including ease of finding appointments, access to resources, advocacy of staff, the breadth of diabetes education available for families, the multidisciplinary approach to care, ease of patient portal, and responsiveness of staff and providers.
As far as the teamwork that in and of itself was amazing, because as adults, when we go to the doctor, your doctor says here’s this pill, here’s the instructions, go home. But for the children, from his admission to the hospital, they had a whole floor in the hospital just for diabetes and I was completely amazed. I had no clue what to do. Not one clue. – FG1 parent
In contrast, some parents discussed feeling discouraged and overwhelmed by the poor and negative communication with their care team members during medical appointments. They believed this was exhibited through the tone and advice given by their provider, leaving them with feelings of being judged.
This is a very difficult disease to manage. They’re [providers] not there to put pressure . . . and have these hostile, uncomfortable conversations with me as a full grown woman, walking out of there in tears because of what you said to my child or how my child took any information that you shared with her. That’s my opinion. They’re judging us. – FG 4 parent
Another common topic that emerged from several focus groups was the difference in having diabetes “textbook knowledge” versus the lived experience of taking care of your own child with diabetes. Participants felt that the medical professionals lacked the lived experience with diabetes, which impacted how they gave advice to families, especially related to diet. Some parents who knew others with diabetes felt that they were more understood by the people they knew than the medical professionals on their care team.
Because you have a degree in whatever you have a degree in, you’re not in the field with my child who has diabetes. You don’t know how it feels to her. You don’t even have diabetes. – FG4 parent
Coping mechanisms
Parents identified coping mechanisms, including faith, seeking social support online, and psychological support via therapy and psychiatry. Parents typically found social support on Facebook groups for parents of children with diabetes. Some parents also educated family members and friends about diabetes management and best practices, increasing social support. Participants had recommendations of coping for themselves and their children. One suggestion was to have children meet NHB adults living with diabetes.
Having a panel where our boys can look at someone that looks like them, [who has diabetes] who is successful in his life. . . . My son, he’s an athlete. . . . Like Mark Andrews who’s the tight end for the Baltimore Ravens has diabetes, he wears a Dexcom and a pump. So I’ll be trying to be like, listen, look, you can do this, here are some examples, but I’m giving him examples of White guys. – FG2 parent
Another suggestion was to provide social support from peers who have shared experiences.
It would be awesome if somebody knew a teenage support group, because I think that’s big, especially, when you’re dealing with teenagers who are prideful, it’s still, don’t want to stand out from their peers, they want to be regular. – FG2 parent
Perspectives on racism: how medical racism appears
Parents provided perspectives on racism. Some parents remarked they had not experienced personal instances of racism at their child’s diabetes clinic but acknowledged that it does exist based on what they have seen in media coverage regarding medical racism.
Personally, thank goodness, we haven’t witnessed any or experience[d] any type of racial disparities at [the study institution]. Not to say it’s not gonna happen, but I’m sure just looking at data and statistics, I can see how these disparities may come into play. – FG2 parent
Another parent observed provider interactions with NHW patients that could be interpreted as racism.
I feel like there’s some more cordialness that is displayed to more, I would say non-Black patients, I see it’s just a friendliness, a camaraderie between patients and doctors and it’s like that you see it in the waiting room like you know, this chumminess that is not always, you know, with everybody. . . . I do see that ’cause we’re all in the same waiting room being called to the same places, but I do see a friendlier nature. – FG1 parent
Others provided different perspectives on how racism looks within the medical setting in general.
Yeah, when it comes to the racial disparity in the health care system, I’m seeing this like a lack of humanization of the patients. So some of the key care providers, they may not give you the same advice with other patients. – FG3 parent
Some participants admitted being unsure of how to fully define racism in health care because they were not privy to seeing treatments or medications received by NHW families.
Like we don’t get to see what White kids have. Like if I had to wear an insulin pump, is my insulin pump bigger than a White kid’s?? I don’t know for sure because we don’t follow the other kids unless you know somebody. – FG5 parent
Specific to another focus group was the importance of respect that parents felt from their care team. Most participants relayed these feelings of respect.
I believe that you should treat a person the way you want to be treated no matter the color of your skin, because at the end of the day you bleed like I bleed. So, racism in the medical field looks like you shortchanging me because of my insurance or my address, where I come from. Like you’re just one wording me or you’re not giving me my time to speak. You’re just telling me what you think I need to do and you’re not hearing my back story, or you just come in the room and you’re judging the book by its cover, and they don’t have to be like that. – FG5 parent
In multiple focus groups, families discussed the lack of diversity in the medical field, especially noting the absence of NHB providers. Some families said they would prefer having more providers that look like them. Many remarked that the system was “segregated.”
I just wanted to mention, at initial diagnosis, I was actually surprised, the lack of diversity on the staff, like it seemed like in [study site hospital], it’s segregated. Like the nursing staff is one group, the cleaning staff is one group, the cafeteria staff is one group, the doctors another group. – FG1 parent
This lack of diversity affected how parents felt they had to present themselves to the care team. Participants stated that when they were “the Black person in the room” or even the only person of color, they felt that they had to be more “put together” for their child’s care team.
I would like to see more providers that look like me . . . there’s a lot of places that I deal with and there are some times I’m the only one in the room and that just happens. And I make sure I handle my business and make sure my stuff is tight and make sure I am doing what I’m supposed to be doing so nobody’s looking at me because I’m the only one in the room. But as far as her [children’s hospital] doctors, like I said, none of them look like her. – FG1 parent
Participants believed that racism in health care was not always limited to a provider’s individual beliefs and behavior but can be the result of racism embedded in the health care system.
Can I just say sometimes it’s systemic though, even if you have that provider that looks like you, if they’re in that system and they’re taught that same way, that can still go on. So it’s I feel it’s very structural issue. It’s not just in interpersonal one-on-one, it’s built into the system. – FG1 parent
Discussion
Guided by a socio-ecological framework, this study described perspectives of parents of NHB children with diabetes to further the understanding of the observed racial disparities in the treatment of children with diabetes. The participants provided us with several insights to guide strategies to address these disparities. Degree of comfort when communicating with the diabetes team, understanding the role of technology, identifying role models, and perceptions of racism in the diabetes clinic were key points that emerged from the surveys and focus groups.
In the intake survey, most parents reported being comfortable talking to their child’s diabetes team. This contrasts with a meta-analysis that showed that NHB patients consistently experienced worse communication quality, information giving, patient participation, and participatory decision-making. 29 Most considered themselves engaged when communicating with providers. Focus group participants voiced many positive aspects of communication with the health care team. Highlighting the importance of a dedicated team to support diabetes management is congruent with the American Diabetes Association Standards of Care. 30 Families viewed the diabetes portal as a method of facilitating communication, although previous data have demonstrated lower rates of portal activation and use in marginalized pediatric diabetes populations. 31
Other parents were less positive about communication and voiced the pain of feeling judged by providers. This compares to a large nationally representative survey in which 40% of NHB parents reported being concerned that they or a family member would be judged unfairly in health care settings because of race. 32 A systematic review by Lauwers et al 33 reported that patients experienced dissatisfaction and encountered shortcomings relative to the diversity competence of their health care providers.
Although participants viewed technology as beneficial to their children’s diabetes care, over 25% of parents surveyed reported that their children were not presented with an insulin pump as a treatment option. A study by Howe et al 34 described barriers faced by NHB children before being offered the option of an insulin pump. Studies have demonstrated that insulin pumps were prescribed to children based on types of insurance, leading to racial disparities, 35 and other researchers reported lower rates of insulin pump use in NHB children regardless of insurance status. 7 The inequitable recommendation of the insulin pump reported by this study population may help to explain marked racial disparities in insulin pump use described previously.2,7,35
Parents stated that showing their children examples of NHB athletes or other NHB persons successfully living with diabetes would be a source of support. Other parents believed a peer support group, particularly for teenagers, would be an effective source of social support for their children. Peer support for children and families of color has been highly evaluated and should be a component of pediatric diabetes care. 36
Another viewpoint expressed by several families was parents’ disappointment at the lack of NHB providers, and they noted the segregation of hierarchical roles in the hospital system; for example, those in the custodial and food services were almost exclusively persons of color. The lack of diversity of the health care team and hospital system has been identified as a component of structural racism. Research has shown that racial concordance of patients and providers is associated with improved communication, trust, and adherence to medical advice.37,38 Increasing team diversity is not only about racial diversity but also about incorporating community members into the workforce. This research team has integrated community health workers into the diabetes teams, and preliminary data have shown a positive impact on addressing SDOH. 11
The perceptions of parents regarding racism in the clinical setting demonstrated a variety of highly nuanced experiences. One parent reported that although they did not experience racism, they were constantly aware that it could happen. Another parent said it was difficult to determine whether diabetes treatment was equal when there was no exposure to the diabetes management of NHW children. A caregiver spoke of how bias was unveiled by a “chumminess” with NHW families when it was possible to observe those interactions. To support this perspective, more warmth and friendliness toward NHW families was also observed in a study of NHB veterans in a dialysis unit. 16 Video-based methods have been used to provide feedback to providers and improve patient-provider communication. 39
The authors are not aware of previous research on hypervigilance in parents of children with diabetes. Survey data showed that many parents reported being hypervigilant very often and in many situations. Comments in the focus groups were congruent with surveys. These data are similar to a study by Jenkins et al 16 in which participants disclosed that they felt an obligation and pressure to present their best selves. A large, nationally representative survey demonstrated that 55% of NHB respondents believed they must be very careful about their appearance to be treated fairly at medical visits. 38 Carter and Forsyth 40 found that racial and ethnic minority adults who reported direct experiences with racism also reported higher levels of anxiety, guilt/shame, avoidance/numbing, and hypervigilance compared to individuals who did not. Parental stress and anxiety have been related to worse diabetes control in children. 41 In this study population, hypervigilance was high in parents of children with T2DM and could be related to stigma related to T2DM that can cause feelings of exclusion, rejection, and blame. 42 Insofar as hypervigilance indicates a response to racism and trauma, Jenkins et al 16 proposed incorporating trauma-informed care to create health care settings that are safe and inclusive. Trauma-informed care considers the pervasive nature of trauma, promotes environments of healing and recovery, and requires training and the engagement of all individuals, practices and protocols, and environments. 43 The components of trauma-informed care include safety, choice, collaboration, trustworthiness, and empowerment. Incorporating these components can guide interventions to address the feedback of the parents. The authors learned that there are areas of improvement for provider communication and trustworthiness. Training for all team members that includes the importance of cultural humility, or the acknowledgment of the need for providers to understand patients’ cultural background to foster trust and better communication, is key.
Diabetes is a condition with a variety of treatment options, but these options have not been provided or utilized equitably, nor has patient voice been adequately incorporated to empower agency. Empowerment has been defined by the World Health Organization as “a process through which people gain greater control over decisions and actions affecting their health.” 44 Decreasing diabetes disparities requires supporting active patient voice through ongoing focus and advisory groups and quality improvement projects to evaluate diabetes treatment outcomes and patient satisfaction.
Limitations
Although this study intended to include a predominantly marginalized patient population, not all participants who agreed to attend the focus groups followed through with the commitment. The focus group participants were well educated, reported good physical and mental health, and were in higher income categories, and many had private insurance. Factors that have been shown to contribute to poor research engagement of low-income populations included family stressors, inflexible work hours or lack of time due to working several jobs, 45 and lack of childcare or transportation. 46 To address those potential barriers, focus groups were scheduled virtually and in the evening. Reminders were sent 1 week prior to and the day of the focus groups. It is possible that there were issues with the social needs reported in the surveys, internet connectivity, or the evening time. Follow up with nonparticipants to determine the reasons for lack of attendance was not done and will be important to include for future studies. The continued underrepresentation of low-income, less educated NHB participants precludes the input of those who may have the most profound experience with racism and bias.
Conclusions
Key insights that emerged from the study included the importance of communicating openly with the diabetes team, the inequitable provision of diabetes technology, a desire for NHB role models, and high levels of hypervigilance in the participants. Innovative strategies focused on patient and parent voice, including the practice of trauma-informed care, can help to address the racial disparities in the treatment and outcomes of youth with diabetes. To ensure a comprehensive approach to providing equitable care, it is essential to evaluate provider approaches, bias, and decision-making. Provider clinical decision-making is being analyzed in the diabetes center to further understand the components of racial disparities. 47 The next step will be to incorporate lessons learned from the provider and caregiver components of this research to address the personal and structural factors impacting diabetes care.
Footnotes
Acknowledgements
Our sincere gratitude for the guidance and collaboration of Dr. Kevin Ahmaad Jenkins and his team at Konquered Healthcare Solutions, LLC; Brianna Richardson, MPH, for her project leadership; Sarah Badlis, BSN, for technical support; and the funding support of the Chair’s Initiative at Children’s Hospital of Philadelphia. We greatly appreciate the caregivers who shared their experiences with the diabetes center and of parenting a child with diabetes.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported through funding from the Chair’s Initiative, Children’s Hospital of Philadelphia.
Ethical Considerations
The study was approved by the Institutional Review Board at Children’s Hospital of Philadelphia.
Consent to Participate
Verbal consent was required and obtained.
Data Availability
Data, including the focus group guide and findings from this research, are available on request.