Equity in the Provision of Diabetes Self-Management Education and Support

Racially and ethnically diverse groups have a higher incidence and likelihood of diabetes than others (3). Moreover, racially and ethnically diverse groups are affected at high rates by disparate adverse outcomes, including mortality associated with diabetes (4–6). Racially or ethnically diverse individuals living with diabetes are less likely to have optimal glycemic outcomes and have a higher risk of diabetes complication–related hospitalizations (7–10).

The DSMES interventions that aim at meeting the unique needs of these groups, including addressing barriers to access, are highly effective, engaging, culturally tailored, and family-centered (11,12). These interventions help PWD achieve and maintain optimal A1C levels, increase the frequency of self-management behaviors such as medication-taking, enhance diabetes knowledge, and increase empowerment. Such targeted efforts serve to meet the cultural needs of PWD.

DSMES strategies that are community-based are culturally congruent, speak to the community’s needs, and are evidence-based in eliminating health disparities (13,14). Furthermore, efforts rooted in community-based participation allow partnerships with communities and the health care system to deliver DSMES where there has historically been low uptake (15). These partnerships allow for high-quality access to care and sufficient and longstanding resources embedded in the communities they serve. DCESs can incorporate tailored education tools, including meal plates specific to cultures and translated education materials, peer support groups, and peer mentoring activities to build relationships and engage with racial and ethnic minority communities for effective DSMES.

It is also crucial to ensure the delivery of family-based DSMES (16,17). Family-based interventions that incorporate close members of a support team provide a sense of community, especially for close-knit cultures that may enjoy participating in group activities. Family- or group-based interventions also leverage accountability, which can be highly effective in maintaining diabetes self-management efforts. Community engagement events held at locations such as libraries and places of worship that incorporate activities, seminars, education, and collectiveness are successful avenues to deliver DSMES (18,19). These types of interventions engage community members, are tailored to meet the specific needs of the community, and are easily accessible and sustainable. Furthermore, layperson educators or community health professionals are welcomed, trusted, and known to have longstanding relationships with culturally accepted and trusted resources that are relevant for the community’s needs (20–22). DCESs can teach these individuals to deliver effective DSMES.

Approximately 80 million adults in the United States are estimated to have limited or low health literacy (23), defined as the degree to which individuals can obtain, process, and understand health information and services to make health decisions (24). Health literacy includes core literacy skills such as reading and writing, speaking, cultural knowledge, and understanding of concepts necessary to interpret health information (25). Low health literacy more frequently presents among older adults, nonnative English speakers, individuals with limited education, and members of racial and ethnic minority groups (26,27). Moreover, U.S. residents speak more than 350 languages (28), and nearly two-thirds of those who do not speak English speak Spanish. It is essential to assess health literacy and use strategies to address low health literacy, when necessary, in DSMES.

Health literacy is strongly associated with an individual’s ability to engage in complex disease management and self-management (29–32). Specific to diabetes, a large meta-analysis showed that higher levels of health literacy were significantly associated with more diabetes knowledge and lower levels of A1C, but not with more frequent self-management activities (33). Thus, PWD can benefit from tailored low-literacy DSMES strategies to prevent morbidity and mortality.

DSMES interventions targeting health literacy improve diabetes self-management behaviors and the ability of PWD to incorporate treatment recommendations into their life (34). Several DSMES interventions in the setting of low health literacy, especially among adults with type 2 diabetes in racial and ethnic minority groups, have shown the effectiveness of low-literacy adaptations (35) and health literacy and numeracy tools in improving diabetes knowledge and self-management (36–38).

ADCES recommends that health literacy interventions may be more effective in a collaborative, person-centered, evidence-based treatment approach. These approaches emphasize interactive communication between individuals and DCESs to develop a care plan. Specific recommended strategies include using plain language rather than medical jargon, presenting the most critical education points first, keeping sentences short, using headers and bullets to break up text in printed materials, and incorporating images to clarify meaning (39) (Table 1). Retention and comprehension improve significantly when the teach-back method is used or when individuals are asked to restate in their own words information that has been communicated (40), especially individuals with low health literacy. Many resources for low-literacy settings exist to support DSMES and benefit the most vulnerable and disproportionately affected PWD.

There are 11 million DHH Americans (41), and these individuals are 3.2 times more likely to self-report a diabetes diagnosis than individuals who can hear (42). Lack of access to linguistically and culturally relevant health information is likely a factor contributing to this disparity (43–45). Deaf people have their own culture and languages, such as American Sign Language (ASL). Importantly, ASL’s grammar structure and syntax differs from English (46). As a result, written DSMES materials may not be understood by DHH individuals unless they are ASL/English bilingual.

Many DHH individuals rely on ASL interpreters for communication. However, qualified ASL interpreters are not provided for most medical appointments (47,48), including diabetes specialty visits (49). To improve communication with DHH people, the health care provider ideally would be fluent in ASL. If that is not possible, ASL interpreters are required by law (50). One ASL interpreter is required for appointments lasting <1 hour, and two ASL interpreters are required for appointments lasting >1 hour. When using interpreters, DCESs and diabetes care teams should direct all communication to the DHH individual and not to the interpreter(s).

In addition to an ASL interpreter, some deaf individuals may benefit from a certified deaf interpreter (CDI). Deaf people understand each other 90–100% of the time. When interacting with individuals who can hear, including an ASL interpreter, information can be fragmented and can decrease understanding 50–70% of the time (51). CDIs are DHH individuals who identify with how DHH people process information and interpret it in a way DHH people may better understand. CDIs can be especially beneficial when a DHH person uses a different sign language than ASL (e.g., home sign or signed language from another country), has fragmented life experience, is undereducated, has developmental delays, or is deaf-blind (52).

ASL interpreters and CDIs can be requested from an interpreting service, although such requests may have to be made up to 48 hours in advance. Requesting interpreters with medical training is preferred. Using interpreters requires more time, so longer appointment times should be scheduled.

Some DHH individuals may benefit from an audio amplifier and/or communication access to real-time translation (CART). CART is the process of transcribing and translating spoken words into text (53). The text appears in real time. In some instances, DHH individuals may have a text-to-speech app on their smartphone. If videos are shown as part of DSMES, closed captioning is recommended.

Virtual delivery of DSMES can be more accessible for DHH populations by incorporating medically trained ASL interpreters and/or real-time captionists on a Health Insurance Portability and Accountability Act–compliant platform with multiway video (48). Whether the DSMES occurs in person or via video, good lighting is essential for DHH individuals to fully visualize sign language and other gestures and/or to read lips. In situations requiring masking, transparent face masks or a powered air-purifying respirator are two options that allow DHH individuals to see health care providers’ face and lips, which can enhance communication (54).

Blindness or low vision can occur as a result of age-related eye disease (i.e., glaucoma, macular degeneration, and cataracts), diabetes-related retinopathy, and other factors and is often permanent. DSMES can be augmented with written materials in large print and/or audio-recorded materials to allow people with blindness or low vision to better retain and recall information. Guidelines for producing large-print or audio-recorded instructions have been developed and tested (55). Importantly, diabetes education videos may not translate well for blind/low-vision people unless all relevant visual information is verbalized.

Tactile and auditory devices can be used for medication delivery and glucose monitoring. Medication dispensers with alarms, talking prescription bottle holders, or pill reminder boxes in braille can be used for oral medications. Insulin can be delivered using insulin pens that click when setting doses or magnifiers on insulin syringes. Talking blood glucose meters, scales, and blood pressure monitors are also available, although not all have an audible memory. The American Diabetes Association’s (ADA’s) online consumer guide allows people to filter commercially available blood glucose meters by audio features (56). Some talking blood glucose meters may require support from a DCES or another support person for initial set-up (57).

No insulin pumps or continuous glucose monitoring (CGM) systems are currently accessible for low vision (e.g., offering voice output, change in font size, or braille) (58,59). Thus, DCESs will need to work with PWD on selecting diabetes technologies with features that support vision needs, such as enhanced color contrast or larger screens. If it is difficult for PWD to enter data (e.g., glucose levels or carbohydrate grams), being taught how to manually bolus insulin by pushing the button a certain number of times may be necessary. DCESs can also help PWD access their CGM data by recommending the use of Siri, Alexa, or the iOS accessibility read-out feature for reporting. Teaching care partners to support medication administration and the use of diabetes technology may also be helpful.

Autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) are the most common neurodevelopmental disorders and are often diagnosed in childhood (60–62). About 1.15–1.58% of PWD live with ASD, and ∼10.5% live with ADHD (63).

People living with ASD may have sensory function disturbances and difficulty communicating (60). Unpredictability or changes in routine can cause immense stress and lead to undesired behaviors (64). Therefore, many PWD who have ASD prefer routines to facilitate meeting self-management goals (60,63). Individuals with ADHD may experience impulsivity and impaired executive function, including planning and working memory. These features may affect the execution of diabetes self-management tasks and become a barrier to following diabetes self-management routines (62,65,66). Therefore, PWD who have neurodevelopmental disorders can benefit from tailored DSMES.

When providing DSMES across the life span to PWD who have ASD, it is essential to include a primary caregiver or support person, who is often the central resource for daily self-management, and to consider one-on-one appointments to reduce sensory disturbances (63). Primary caregivers can aid with anxiety related to unfamiliarity by providing open communication during the visit and helping neurodiverse PWD identify goals that fit within their routines (60,64). They can also help DCESs assess the preferred communication methods and social and behavioral skills of PWD who have ASD (64).

Individuals with ASD are less likely to use insulin pump therapy because of increased tactile sensitivity and hypersensitivity to certain sounds (64). However, many still use CGM to help safely communicate hypoglycemia (60). When educating people with ASD on diabetes technology usage, it is essential to support them in expecting and managing technology-related sensory disruptions such as audio alerts or vibrations for glycemic excursions.

Involving family members and social support resources aids in meeting diabetes self-management goals for PWD who have ADHD (63,66). Impaired executive function, in particular, is recognized as a barrier to self-management and should be considered when setting self-management goals. DCESs can help individuals overcome executive functioning challenges by devising a routine (62,63) and setting achievable self-management goals. Placing a greater focus on topics such as the organization of diabetes supplies, technologies, tasks, and time management is one important way to adapt self-management education for people with ADHD (66).

In summary, PWD who have neurodevelopmental disorders need to incorporate routines into diabetes self-management plans with support from caregivers. There should be a great emphasis on effective coping skills and collaboration with a multidisciplinary team for self-management, including psychologists, psychiatrists, therapists, and social workers, to optimize diabetes care.

Adults with diabetes are two to three times more likely to have an LD than the general population (67). Specifically, women, younger adults, or those living in rural settings are at higher risk of having diabetes and an LD (68). Common characteristics of LDs include short attention span, memory difficulty, difficulty following directions, inability to discriminate between letters or numbers, limited reading or writing ability, lack of hand-eye coordination, disorganization, and sensory challenges, all of which are barriers to daily diabetes self-management tasks. Those with IDDs present intellectual functioning and adaptive behavior limitations, affecting daily social and practical skills and complicating diabetes self-management tasks.

Optimal DSMES is delivered individually to PWD who have LDs or IDDs and their caregivers. Individuals with LDs or IDDs often rely on caregiver support for daily functioning, including diabetes self-management tasks and shared decision-making (69). Problem-solving is a core skill involved in diabetes self-management, and caregivers or support people therefore need to be integrated into DSMES visits (67,69). DCESs can work with caregivers to understand how PWD who have LDs or IDDs can manage diabetes within safe limits (67,69). DCESs have a unique role in empowering people with LDs or IDDs to exercise autonomy in diabetes self-management, build confidence, and practice new self-management skills, while also building on their caregivers’ capacity (67,69).

During DSMES, there should be an increased emphasis on emotional needs and psychosocial factors, which may differ from those of other adults living with diabetes. Many individuals with LDs or IDDs may live in group housing or with family, and self-management success often depends on support in their home setting (69,70). PWD who have LDs or IDDs are often influenced by environmental factors rather than internal motivations for diabetes self-management tasks. For example, those who live in shared living situations may have peers with unrestricted diets, resulting in feelings of isolation, and these factors should be considered during self-management goal-setting (67,69,70).

Social workers and the multidisciplinary team, including care partners at group residential facilities, should be included in diabetes self-management plans and communications for these individuals. Additionally, more frequent communication between DSMES visits is essential, and regularly scheduled telephone or virtual visits are needed to effectively assess self-management goals and follow-up (69).

PWD are twice as likely as their peers to develop dementia (71,72) and are even more likely to experience mild cognitive impairment (73). Older adults with diabetes who develop cognitive impairment are at a significantly increased risk of subsequent hospitalization for hypoglycemia (74,75). Hypoglycemia is a common and dangerous complication for this population, as it can cause cardiac events, loss of consciousness, falls, seizures, and hospitalizations (76–78). Cognitive deficits interfere with diabetes self-management, which leads to further decreased cognition.

PWD with cognitive impairment are at high risk for experiencing several serious problems associated with managing a complicated disease such as diabetes. Memory loss leads to errors such as forgetting to inject insulin or take other medications, eat on time, eat before exercise, and attend clinic visits (79). Cognitive impairment causes problem-solving difficulties such as problems integrating new instructions into practice and the inability to recognize or treat hypoglycemia. Individuals with cognitive impairment have trouble stopping old behaviors and starting new behaviors, and they may make errors when old routines are changed. Difficulty with mental flexibility leaves these individuals feeling anxious about “failing” treatment plans (79). Cognitive decline increases the risk for diabetes self-management errors and requires care partners to become involved; yet, only 25% of diabetes care partners rated themselves as informed when they first began assisting someone with diabetes (80).

Strategies to improve DSMES in older adults with cognitive impairment were developed by Munshi (79) and include simplifying treatment plans, instituting a system of reminders, making small changes at a time, and involving a caregiver in goal-setting and plan execution. Recommendations for managing diabetes in older adults in the ADA’s Standards of Medical Care in Diabetes (81) also include using CGM to predict and reduce the risk of hypoglycemia for older adults with type 1 diabetes. DCESs are integral in assisting older adults with diabetes and their care partners in successfully and continuously using CGM, by providing education on the use of devices and related apps and through data-sharing. CGM data-sharing interventions are promising when integrated into DSMES and focus on communication, problem-solving, and action-planning in older adults with type 1 diabetes and their care partners. More strategies for providing tailored DSMES for older adults are needed (82).

SGM individuals have a higher incidence of diabetes and adverse diabetes outcomes than their heterosexual counterparts, and the incidence rate increases when SGM individuals also belong to racial/ethnic minority groups (83). PWD who are SGM individuals also experience double the unemployment rate of other populations, further increasing the likelihood of lack of health insurance and acute diabetes-related complications (84,85). Despite gains in social equity for SGM individuals and some policy reform to reduce vulnerability, ongoing transphobic and homophobic sentiment and the proliferation of repressive laws such as those excluding the provision of or insurance coverage for health care services for transgender people make it difficult for this population to gain civil rights and health care equality (86).

SGM PWD have unique lived experiences (87). Frequently, these individuals feel that they cannot be open about their health history with their health care team because they fear being judged, discriminated against, and ultimately deprived of proper health care (84,88,89). These individuals often feel that they cannot expose their sexual or gender identity because they fear discrimination or because their health care professionals do not care to ask (90).

Providing culturally centered diabetes care is vital in connecting and building respect and rapport with SGMs. An example of this is identification of correct pronouns in the electronic health record, appropriately expansive gender options, and romantic relationship status. If this information is not available, asking individuals how they would like to be addressed signals a more welcoming environment than by just making assumptions (91). Having intake forms that allow individuals to communicate their correct gender and relationship status demonstrates a partnership with SGMs. Building this respect and trust is vital to effective DSMES partnerships between DCESs and SGM PWD (92).

Additionally, DSMES interventions that include community support groups in which SGMs have a safe space to learn about their health and share health-seeking–related activities have been shown to have positive outcomes (93). Allowing PWD’s romantic partners to join health-related conversations has had significant results in the realm of DSMES by demonstrating that their relationships are welcomed while also equipping partners with education needed to provide support and encourage accountability (94,95). Referring PWD to provider networks that have partnerships with SGMs is a powerful way to overcome barriers to care (96). Providing resources with inclusive language, illustrations, and photographs is also effective. Lastly, promoting an environment through education and policies that is committed to culturally centered and inclusive care is the best way to successfully build trust and have a positive impact on SDM individuals.

A national standard for DSMES is to deliver person-centered and individualized care. To meet this standard and address health equity, it is crucial to tailor DSMES to meet the complex needs of populations that have been historically underrepresented. PWD that fall into this category include but are not limited to those who are racially or ethnically diverse, have limited English proficiency or literacy, are DHH, are blind or have low vision, are neurodiverse, have IDDs or LDs, have dementia or cognitive impairment, or are SGM.

Although each of these populations has differing needs, there are commonalities in effective DSMES intervention components across populations. Such components include using peer support, incorporating DSMES into the community, building trust between DCESs and PWD, preferring individual appointments over group visits, and including family members or care partners in DSMES visits. In addition, considering how individuals understand and interpret diabetes information, how they best communicate, including nonverbally, and what their beliefs, values, and family structures are is essential to delivering effective DSMES (29,97,98). It is crucial for DCESs and diabetes care teams to ask direct questions regarding support people, living situations, communication and learning preferences, culture, knowledge, beliefs, and values to best tailor DSMES (1).

Table 2 provides a listing of tailored resources and tools to assist diabetes care teams who work with PWD within the special populations discussed in this article. However, more research is needed to determine effective strategies for the provision of care in these groups. Clinical trials of targeted interventions should be conducted in multiple sites to provide the necessary diversity and sufficient sample sizes and to be applicable for groups with low overall numbers such as the DHH and neurodiverse populations.

There remain challenges to implementing our recommendations for improving health equity in DSMES delivery. First, we could not provide an all-inclusive guide to each existing, diverse population. Rather, this article is meant to highlight just some tailored components of DSMES as a starting point for addressing health equity gaps in diabetes care. Furthermore, although we have parsed these populations individually, it is crucial to consider that there may be individuals at the intersections of multiple populations who have multiple, unique needs. Future research should focus on implementing tailored DSMES interventions on a larger scale to diverse populations, including individuals who are members of multiple population groups.

Gaps in delivering tailored DSMES to populations remain, as sufficient toolkits and resources are lacking. Because of extrinsic factors such as lack of access, barriers to care, health care inequities, systemic health care barriers, scarcity of resources, and limited DCES personnel, it is more imperative than ever that we provide adequate DSMES and equip PWD in vulnerable communities with the tools, connections, and resources they need to successfully self-manage their diabetes.

The authors thank Tommy Schafer, MPH, for reviewing and providing guidance on the SGM section.

This publication is funded in part by the Gordon and Betty Moore Foundation through grant GBMF9048 to M.L.L.

J.E.B. is a consultant for WellDoc LLC, an independent contractor for Insulet Corporation and Tandem Diabetes, and an advisory board member for Cardinal Health and Provention Bio. N.A.A. is a consultant for Diathrive and a speaker for Dexcom. M.L.L. was a principal investigator of an investigator-initiated study for Abbott and serves on the Diabetes Wise Professional Advisory Committee unrelated to this study. No other potential conflicts of interest relevant to this article were reported.

J.E.B. wrote, reviewed, and edited the manuscript. S.P.A. wrote the manuscript. N.A.A. and M.L.L. wrote and reviewed the manuscript. J.E.B. is the guarantor of this work and, as such, takes responsibility for the integrity and accuracy of the literature reviewed and discussed in this article.