Ann S. Williams

A focus group study of accessibility and related psychosocial issues in diabetes education for people with visual impairment.

PURPOSE This study was conducted to identify accessibility and related psychosocial issues in diabetes care and education for visually impaired adults who have diabetes. METHODS Two focus groups of adults with visual impairment and diabetes were conducted; data were recorded and analyzed. RESULTS The 3 main issues identified were lack of access to up-to-date diabetes information in an accessible format, lack of understanding by healthcare providers of the needs and competencies of people with both visual impairment and diabetes, and lack of access to nonvisual diabetes self-management equipment. CONCLUSIONS This study provides qualitative support for the view that visually impaired people in the United States may, as a group, be systematically excluded from receiving high quality diabetes care and education. Equal access to diabetes care and education for visually impaired people requires increased accessibility of diabetes care and education programs, and increased professional and public awareness that the diabetes programs are accessible. Some specific recommendations are to make all patient education materials available in low-vision/nonvisual formats and to teach all diabetes education professionals how to work effectively with visually impaired people.PURPOSE This study was conducted to identify accessibility and related psychosocial issues in diabetes care and education for visually impaired adults who have diabetes. METHODS Two focus groups of adults with visual impairment and diabetes were conducted; data were recorded and analyzed. RESULTS The 3 main issues identified were lack of access to up-to-date diabetes information in an accessible format, lack of understanding by healthcare providers of the needs and competencies of people with both visual impairment and diabetes, and lack of access to nonvisual diabetes self-management equipment. CONCLUSIONS This study provides qualitative support for the view that visually impaired people in the United States may, as a group, be systematically excluded from receiving high quality diabetes care and education. Equal access to diabetes care and education for visually impaired people requires increased accessibility of diabetes care and education programs, and increased professional and public awareness that the diabetes programs are accessible. Some specific recommendations are to make all patient education materials available in low-vision/nonvisual formats and to teach all diabetes education professionals how to work effectively with visually impaired people.

A Comparison of Dosing Accuracy: Visually Impaired and Sighted People Using Insulin Pens

Background: In the United States, 18% of people with diagnosed diabetes have visual impairment. Insulin pens are widely used by both blind and sighted people. However, major manufacturers include a disclaimer in the instructions warning against use by visually impaired people, without giving a rationale. Published studies neither support nor refute the disclaimer. Method: The purpose of this study was to compare accuracy of dosing with insulin pens between visually impaired and sighted people. Inclusion criteria were self-reported diabetes and inability (visually impaired group) or ability (sighted group) to read regular print. The sole exclusion criterion was inability to pass a brief test of decisional capacity. Each participant received standardized instructions for insulin pen use, either in recorded (visually impaired group) or in printed (sighted group) format, and delivered 10 systematically varied doses into an injection ball, which was weighed on a precision laboratory balance. Results: No significant correlation with accuracy of insulin dosing was found for any of the analyzed variables: Visual status, age, gender, years of having diabetes mellitus (DM), or treatment of DM with or without insulin. Conclusions: This study provided preliminary evidence of the safety of use of insulin pens by visually impaired people and raised questions about the validity of the disclaimer. Further study of the safety of use of insulin pens by blind people is needed. Inclusion of people with disabilities in research on technology intended for patient use would ensure that people with disabilities can benefit from new technology.

Making Diabetes Education Accessible for People With Visual Impairment

Purpose The purpose of this study was to identify changes needed to make the diabetes education materials and programs of the Diabetes Association of Greater Cleveland (DAGC) accessible for people who have visual impairment and diabetes (PVID). Methods Using the principles and techniques of participatory action research (PAR), 5 PVID and 4 staff members of a local diabetes association met once a month for a year to plan, implement, and evaluate progress toward full accessibility of all diabetes education materials and programs. The researcher served as facilitator. Results Four “transformational moments” are presented through which the PAR process enabled PVID and diabetes professionals to learn to understand and trust each other. Changes made to increase accessibility included production of 2 recordings for providing access to print information about diabetes; planning public education program publicity and locations for access; development of guidelines to help speakers make their diabetes education presentations accessible for people who cannot see slides and gestures; and presentation of an inservice for the entire staff of the diabetes association, including information about how they live with visual impairment, and common courtesies that make communication with PVID more effective. Conclusions Diabetes education programs should include planning for full accessibility for PVID. Diabetes organizations should publish teaching materials in accessible format.

Universal Design in Diabetes Care An Idea Whose Time Has Come

Purpose The purpose of this article is to introduce diabetes educators to the emerging concept of universal design (UD): the design of products, environments, and services to be used by persons with a wide range of abilities, without needing adaptation or specialized design. Method Drawing from the use of the term universal design in a variety of types of writing, this article covers the definition of UD, the contrast of average-person design with UD, principles of UD, and implications for diabetes self-management education (DSME). Summary Implications for DSME are (1) diabetes consumer medical devices (such as blood glucose meters and insulin pumps) can be designed using UD principles, with a goal of successful use by the largest number of persons possible, and (2) diabetes educators can use UD principles in the design of diabetes education programs to reach the largest number of learners possible without the need for special accommodations. Conclusions Adoption of UD principles by designers of diabetes medical devices could benefit persons with disabilities, increase the potential market for the manufacturer, and have unexpected benefits for people of average abilities. Adoption of UD principles for DSME programs would not require a paradigm change because diabetes educators already do many activities that could contribute to UD of an education program. By replacing average-person design of DSME programs with UD, diabetes educators can promote full participation in DSME for individuals with the wide range of abilities normally present in target populations without the need for added adaptations or specialized design.

Diabetes and Disabilities Assistive Tools, Services, and Information

The purpose of this guide is to provide diabetes educators with a comprehensive list of assistive tools, services, and information for diabetes self-management for people with visual, manual, and hearing disabilities. A list of tools and products has been compiled by members of the Disabilities Specialty Practice Group (DSPG) and is updated periodically. The original list was assembled in 1988 with the support of a grant from the Diabetes Research and Education Foundation, Bridgewater, New Jersey. The last revised list was titled “Diabetes Aids and Products for People With Visual or Physical Impairment” and was published in Diabetes Educ. 1992;18:121-138. In addition to tools and products, organizations that provide services and information for people with disabilities are provided to diabetes educators.

Analysis: Linking Laboratory Data to Human Factors and Inclusion of Persons with Disabilities in Diabetes Technology Research

In this issue of Journal of Diabetes Science and Technology, Friedrichs and colleagues present a study of the injection force of four reusable insulin pens and another study of the dosing accuracy of three different insulin pens. For the study of injection force, the authors claim that lower injection force has numerous advantages for patients, including making use of pens easier for people with decreased hand strength. For the study of dosing accuracy, the authors state that dose accuracy is critical for glycemic control. Both study designs have significant strengths, including measurements of the variable of interest using two different methodologies and thorough documentation of methods and materials. However, the careful, precise measurements of injection force and dosing accuracy are not matched by equivalent precision supporting the significance of the studies. The authors do not provide any information about what measured injection force is easy or difficult for individuals with and without manual problems or what level of dosing inaccuracy is clinically significant. Therefore, the implications for practice remain unclear. Data about these and other relevant human factors are needed to provide meaningful context for laboratory measurements of diabetes technologies. Furthermore, researchers conducting studies of diabetes technology that include human subjects should intentionally recruit persons with disabilities so diabetes care professionals can know whether and how technical information about diabetes technology applies to the full range of patients, including those with disabilities.

Creating low vision and nonvisual instructions for diabetes technology: an empirically validated process.

Introduction: Nearly 20% of the adults with diagnosed diabetes in the United States also have visual impairment. Many individuals in this group perform routine diabetes self-management tasks independently often using technology that was not specifically designed for use by people with visual impairment (e.g., insulin pumps and pens). Equitable care for persons with disabilities requires providing instructions in formats accessible for nonreaders. However, instructions in accessible formats, such as recordings, braille, or digital documents that are legible to screen readers, are seldom available. Method: This article includes a summary of existing guidelines for creating accessible documents. The guidelines are followed by a description of the production of accessible nonvisual instructions for use of insulin pens used in a study of dosing accuracy. The study results indicate that the instructions were used successfully by 40 persons with visual impairment. Discussion and Conclusions: Instructions in accessible formats can increase access to the benefits of diabetes technology for persons with visual impairment. Recorded instructions may also be useful to sighted persons who do not read well, such as those with dyslexia, low literacy, or who use English as a second language. Finally, they may have important benefits for fully sighted people who find it easier to learn to use technology by handling the equipment while listening to instructions. Manufacturers may also benefit from marketing to an increased pool of potential users.

Ensuring Valid Measurements for a Disabled Population: An Insulin Pen Pilot Study

Health promotion and self-management for persons with disabilities have been severely underemphasized in health care research. As researchers seek to fill these gaps in knowledge, it is essential that they validate their methods through use of pilot studies. The following pilot study illustrates how such exploration can lead to unexpected and necessary modification of methods. The study focused on measurement of dosing accuracy by blind people using insulin pens. The National Federation of the Blind provided in-kind support for the study. The original study design used a common method for measuring dose accuracy: weighing insulin delivered into a small cup. For the pilot, 12 blind staff members of the U.S. National Federation of the Blind received instruction on insulin pen use and delivered doses into a small cup. Audible “clicks” for each dose were counted and recorded by the researchers, and the cups were weighed immediately before and after each dose using a precision balance. All doses (100%) were dialed correctly according to the click count. However, four doses had greater than 20% error by weight. During the last two of these doses, the principal investigator and research assistant independently noticed a large hanging drop of insulin remaining on the end of the needle. The hanging drop was a source of error for these two doses and may have been an unnoticed source of error for the other two doses. Measurement error produced by hanging drops is much less likely when sighted people deliver a dose, since they could see and shake off the drop. Blind people do not see the drop, and their dosing may seem inaccurate in comparison. This source of error has no clinical significance; anyone using an insulin pen would inject into subcutaneous tissue, which would not leave a hanging drop on the needle. The error is an artifact of the measurement method. Because this source of error was discovered in the pilot study, the measurement method for a larger follow-up study was changed to weighing insulin delivered into an injection ball (a rubber ball used to teach injections), which simulates injection into subcutaneous tissue more closely. If this source of error had not been noticed in pilot testing, the results of the larger study would have been artificially biased. The importance of conducting pilot studies to validate methods with disabled populations cannot be overemphasized. As this pilot study illustrates, a method that is valid in a nondisabled population but not pilot tested with a disabled population could reinforce inaccurate and limiting stereotypes about the true abilities of people with disabilities.

The 2017 Diabetes Educator and the Diabetes Self-Management Education National Practice Survey:

Purpose The American Association of Diabetes Educators conducts the National Practice Survey (NPS) biennially to document current practice in diabetes education in the United States. The purpose of the study is to obtain insight about factors influencing the work of the diabetes educator. Method The 2017 NPS was comprised of 100 questions covering diabetes educator demographics, profile populations of people with diabetes, practice information, program accreditation, program curriculum, staffing, education delivery methods, data collection, and reporting. The basic survey consisted of 22 questions using branch logic, from which respondents were then directed to questions tailored to their particular practice setting, enabling them to answer only a relevant subset of the remaining questions. The web-based survey was sent to approximately 32 000 individuals who were either members of the American Association of Diabetes Educators (AADE) or Certified Diabetes Educators (CDE) with the National Certification Board for Diabetes Educators (NCBDE) but not AADE members. Weekly reminder e-mails were sent to recipients who had not yet responded. The outreach efforts resulted in the survey being completed by 4696 individuals, a 17% response rate yielding 95% confidence that these responses are within ±5% accuracy. Results Diabetes Self-Management Education and Support (DSMES) continues to be a field dominated by women (95%). Diabetes educators represent a diverse health care profession, with educators indicating most commonly that their primary discipline is nursing (48%), nutrition (38%), and pharmacy (7%). When asked about credentials, 82.6% indicated that they held a CDE, 3.8% held the Board Certified-Advanced Diabetes Management (BC-ADM) credential, and 16.5% held neither the CDE nor the BC-ADM. Nearly 75% characterized their role as a diabetes educator as providing direct patient care. DSMES continued to be provided in a varied array of settings to educationally, socioeconomically, and racially diverse patient populations. DSMES was delivered using a number of different educational strategies. Diabetes educators have direct influence in care and services that people with diabetes receive. Conclusions The results of the 2017 NPS demonstrate that diabetes educators are meeting the needs of varied populations in various practice settings. They are working with individuals with type 1 and type 2 diabetes, those at risk for diabetes, and women with gestational diabetes and are involved in recommending, implementing, and providing key referrals and recommendations for diabetes care, including insulin initiation, titration, medication adjustments, recommendations on devices, and technology. Identified areas for improvement include needs for increased racial and ethnic diversity in the workforce, recruiting young professionals, drawing practice approaches from related disciplines (eg, mental health and disability rehabilitation), and encouraging tracking of more areas of outcomes data. Diabetes educators are playing an increasingly central role within multidisciplinary care teams with people at risk for diabetes, those who have diabetes, and those with other chronic conditions.