The composition of the diabetes education team varies from one institution to another depending on its size and financial resources. The team may be comprised of a nurse, physicians, dietitians, psychologists, social workers, pharmacists, exercise physiologists, ophthalmologist, optometrist, podiatrist, and other related disciplines. Coordinating patient education can be a problem in large, complex organizations. The team approach provides the patient with expert perspective on different aspects of diabetes self-care management.
For example, the dietitian provides expertise on diet therapy while an exercise physiologist provides an expert perspective on exercise and physical activities. However, like any situation where a variety of people provide patient education, consistency in message conveyed is an important issue to address. Patients get confused if they hear different opinions from a variety of experts. Having a written curriculum and agreeing on the content to be delivered prior to conducting learning sessions can prevent this problem. Regular staff meetings are good channels to resolve conflicting opinions among staff. All American Diabetes Association (ADA)-recognized DSME programs have at least a registered nurse and a registered dietitian. These staff members must be certified diabetes educators or have recent experience in diabetes education and management. They are credentialed by the National Certification Board for Diabetes Educators after fulfilling all the criteria for experience in diabetes teaching and mastery of specific body of knowledge in diabetes and adult teaching demonstrated by passing a written examination (Fig. 40.1).
Fig. 40.1 A model depicting the complexity of variables that can influence diabetes management. Reprinted with permission from Anderson and Funnell
Assessment of Learning Needs
Because adult learners come to the educational experience with a variety of personal, family, and cultural factors there is not one standard for teaching content. Assessment of the individual needs is the first step to facilitate learning. Various factors (physical, psychological, social, and cognitive) that may hinder learning should be assessed (see Table 40.2). Having the diagnosis of diabetes poses and additional stressor to the learning situation. Many may have learned bits and pieces about diabetes self-management over a period of time and experiences and they may be asked to unlearn some things. Furthermore, since learning encompasses more than knowledge acquisition, these patients are also asked to modify their behavior toward a healthier lifestyle. The different factors that need to be considered in this assessment process are discussed below. This section only includes the assessment of the adult learner. For information about diabetes teaching in children and adolescents we refer the reader to the end of the chapter for a listing of resources.
Table 40.2 Barriers to learning
Physical barriers Psychological barriers Social barriers Cognitive barriers
Pain Fear Lack of family support Low-literacy skills
Blindness Denial Language barrier Memory impairment
Hard of hearing Anxiety Limited financial resources
Poor manual dexterity Depression Poor access to care
Fatigue Lack of motivation Beliefs and values
Physical symptoms of
With increasing complexity of the health-care system, the subject of health literacy has been the focus of much attention lately. A report by the Institute of Medicine and Agency for Healthcare Research and Quality stated that there are about 90 million adults in the United States who are unable to maneuver the health-care system and fully benefit from it. Functional health literacy means the ability to read, comprehend, and use information to make decisions pertaining to health issues. To be considered health literate the person needs to be able to do tasks such as reading and understanding written health instructions, medicine labels, consent forms, and appointment schedules; understanding written and oral information from health-care providers; and act on these information.
The 2003 National Assessment of Adult Literacy by the National Center for Education Statistics survey found that about 14% (30 million) have “below basic” level of prose literacy (the ability to use printed and written information to function in the society toward achievement of goals and developing knowledge and potential). These skills may include reading and understanding a bus or train schedules, appointments, medication or food labels, and the like. The cost of health care among persons with inadequate health literacy is higher than those who have adequate health literacy. It is estimated that about $50–$73 billion could be saved each year by improving health literacy. These savings can be realized mostly by reducing unnecessary hospitalizations, delays in treatment, and problems with prescriptions. Health literacy is an issue in diabetes self-management education. The individual with diabetes needs to be able to understand and process the information and then act on it. In a study of 2659 low-income patients in an ambulatory center at two public hospitals, it was found that about 42% did not understand the instruction “to take medicine on empty stomach.” Diabetes instructions are far more complex than this. For example, when learning insulin dose adjustment according to fingersticks and carbohydrate intake, the individual has to be able to do the mechanical aspect of the task, understand the interaction between blood glucose, carbohydrate intake, physical activity, and insulin, and use this information making a decision about dose adjustment. This is not a simple task for a patient with low literacy and instructions must be tailored to the individual.
Assessing functional health literacy is not very straightforward. Routine screening is actually controversial because of the possibility of stigmatizing those with low literacy. There is always a possibility that physicians might refrain from taking low literacy patients because they are more difficult to treat. Many adults would not volunteer the information regarding their inability to read and write because of shame. Unfortunately, the person’s years of schooling do not always predict level of health literacy. Educational and literacy levels are important factors that influence learning. They determine how people learn and the amount of complexity they can tolerate in a learning situation. Some learn best by listening versus reading, while others prefer viewing a video. There are several methods for measuring literacy, but probably none is practical for use in clinical practice. Physical appearance is an unreliable measure of literacy skills. Patient’s educational level and ability to communicate do not measure literacy level. Many patients have average IQ and can be very articulate. Estimating patient’s reading level in a clinical setting is neither practical nor reliable since it does not necessarily translate to comprehension. A simple and practical way to assess literacy by a general internist is to ask patient to read a medicine label and ask them to tell how they would take that medication. This can be a useful screening tool to rule out the possibility of low health literacy. Patients will attempt to conceal their inability to read and write through avoidance of the situation. These are some red flags that should alert the physician to possible low literacy problem.
• Problem with eyesight: “I forgot my eyeglasses.” “My eyes are tired, could you read this for me?”
• Lack of interest in reading instructions: “I’d let my wife read it first.” “I don’t need these papers. Just show me how.”
• Unable to figure out written instructions: “Could you please tell me which one of these papers is for the eye doctor?” “Could you please mark the paper for the eye doctor.”
• Inability to tell you the name of their medicine: “I take one red pill and two white pills.”
• Not taking their medications as prescribed: This may not be related to low literacy in many instances. However, inability to read medication labels should be ruled out when patients do not take their medications properly.
• Missing appointments: Again this may not mean low literacy but a patient who misses many appointments may actually have difficulty reading and following written instructions given by the physician.
• Refuses to fill out forms: “It takes too much time.” “I’ll take it home and let my daughter do it.”
• Underutilization of the health-care services: Many patients may have other reasons for doing this but those with low literacy almost always underutilize health-care services.
Many patients with low literacy have developed coping mechanisms to deal with their learning disability. Many are able to learn diabetes self-management if taught at a level they can comprehend. The physician should be sensitive to the patient’s needs by asking questions to verify understanding of the verbal or written instructions. One should never assume that the patient understands. There are a variety of methods to evaluate learning initially and periodically in future visits. Methods used to decrease literacy demands and to evaluate learning are expanded upon below.
Fear, anxiety, denial, depression, and other psychological states can interfere with readiness to learn. The physician and educator should be aware of these problems and refer the patient to the psychiatrist, psychologist, or social worker as appropriate. Social stressors such as lack of insurance and lack of social support may also interfere with learning and should be part of the routine assessment prior to the learning encounters
The prevalence of diabetes is highest among the ethnic minority populations such as African Americans, Hispanic Americans, and Native Americans. However, in big cities like New York other minority groups may also be prevalent. According to a study carried out by the New York City Department of Health and Mental Hygiene, diabetes is prevalent among the South Asians who comprise people from Bangladesh, Pakistan, India, and Sri Lanka. The study indicates that “more than half of the New Yorkers whose families are from the Indian subcontinent have either diabetes or prediabetes.” Unfortunately, this community has historically been underrepresented within the health-care system. Generally, ethnic groups also have a lower health status than the majority of the population. The values, beliefs, rules of behavior, and lifestyle practices of the person guide their thinking and actions in particular ways.
The shortage or lack of culturally appropriate diabetes education materials and skilled educators has a negative and therefore nonproductive impact on an individual’s self-management and understanding of diabetes. Therefore, physicians need to address the needs of ethnic groups by providing culturally competent and relevant diabetes self-management approach. This can help strengthen the effectiveness of diabetes self-management and control. The educational material and tools must speak to cultural relevance in order to be fully utilized by the patient. Teaching must encompass behaviors, attitudes, and policies that are reflective in the ethnic/cultural group. Assumptions should be avoided based on an individual’s ethnic identification. Thus, physician education that includes cultural competence as a component of disease management strategy is essential in deploying the highest standards in the chronic management of diabetes if the community is to reap the benefits of the improvements in diabetes management and education. Culture greatly influences the way the person makes decision regarding health care. When facilitating learning for a patient who belongs to a particular ethnic group, a cultural assessment needs to be done. This assessment is focused on elements relevant to the medical problem and interventions as well as the evaluation of the effectiveness of treatment.
• What language does the patient speak?
• What role does the family play in patient’s illness?
• What is the patient’s status within the family structure? What are the patient’s role/responsibilities/obligations within the family?
• Where does the patient live? With whom? Type of neighborhood (health-care resources, environmental stressors)?
• Who does the patient go to for health advice or treatment of diabetes?
• Does the patient use folk medicines? If so, what are they?
• What does the patient expect from diabetes treatment?
• What is the patient’s perception about the health-care system?
• Who makes decisions for patients in terms of health care?
• What values does the patient have regarding foods?
• What are the patient’s religious or spiritual beliefs and values?
• What are the patient’s routine daily activities?
Effective communication, both verbal and nonverbal, is the first step used to engaging the patient from a different culture in a meaningful interaction. Awareness of the ethnic groups’ rules of conversation such as social introduction, demonstrating respect, and lack of hurried behavior is one of the key communication skills. The medical practitioners must have knowledge about when to choose a personalized or more detached mode of communication; when to select direct or indirect approaches; and when and how to use silence or touch to interact with different ethnic groups is very important. Whenever possible, the patient should be referred to an educator with knowledge and skills in dealing with the specific culture. This person has to be able to adapt communication and interaction patterns, make relevant cultural assessment, and modify the diabetes education program to suit the patient’s needs. Patient’s cultural beliefs and values should be considered when facilitating the patient to learn diabetes self-management practices. A common mistake is to do nutritional counseling without taking into consideration the patient’s values about food, meal preparation, the type of ethnic food he or she eats, dietary patters, and religious practices involving fasting or feasting.
Special Needs of the Elderly
Diabetes affects the elderly population at a high rate and incidence of cognitive impairment increases with age. Diabetes is associated with decline in cognitive function which is often undiagnosed and related to poorer diabetes control. This group has special needs that have to be considered when providing diabetes selfmanagement education. When assessing the needs of the elderly, one has to keep in mind that there are several factors that may affect their learning. These factors are outlined in Table 40.3
Table 40.3 Factors that may affect learning in the elderly
• Sensory impairment: vision, hearing
• Psychomotor abilities (opening pill bottles, drawing
up insulin, testing blood glucose)
• Coexisting medical conditions
• Memory and learning abilities
• Financial issues (fixed income)
• Family and social support
• Access to care (transportation)
In dealing with the elderly with diabetes, it is important not to make assumptions about the patient’s mental competence, cognitive function, and physical abilities based on age. These have to be assessed individually since the person can learn at any age. Negative attitudes of the health-care professionals toward the elderly can affect their behavior and management of diabetes. Stereotypes about the elderly may lead to withholding treatment choices and educational opportunities. A multidisciplinary approach is essential in caring for the elderly and cognitively impaired. DSME for these individuals should be done on a one-to-one basis using slow paced stepwise method of teaching and involving memory aids. Some simple strategies to use with elderly and cognitively impaired for DSME are as follows:
• Suggest glucose meter with large display and simple to use
• Simplify medication, especially insulin regimen; if possible, avoid sliding scale
• Emphasize symptoms of hypoglycemia and give specific instructions for its treatment
• Involve care giver during educational sessions
• Give clear simple written instructions for patients to take home
Knowledge of the adolescents’ attention span and developmental and cognitive maturity levels are important considerations in teaching adolescent groups. Developmental delays or learning disabilities may hamper understanding of diabetes self-management; therefore necessary accommodations should be made to facilitate learning. Moreover, diabetes management may not be a priority of a teenager and this can result in poor control. To complicate matters, changing hormones can mean more problems with glycemic control. At this stage of development, adolescents search for self-identity and independence. They are becoming more aware of their body image and how their peer group perceives them. They want to be independent and this can conflict with their parents who feel overprotective and responsible for their child’s diabetes care. A diagnosis of diabetes may cause or worsen feelings of low self-esteem, eating disorders, distorted body image, and depression. Adolescents are at an age where formal operational thinking and abstract reasoning are beginning to develop. Therefore, they can comprehend the importance of diabetes self-management but environmental factors can and will impede their efforts to do so.
The adolescent is focused on short-term rather than long-term goals. Explaining the relevance of their choices for glucose control rather than on long-term complications of diabetes might be more effective in motivating them toward self-management. Use of innovative and interactive modalities of learning can be very useful in teaching adolescents. For example, use of computers, videos, games, camp experiences, and peer support groups that focus on decision making are more effective than a structured group class. The teen must be encouraged freedom of choice and self-direction. Involving the family or caregiver throughout the educational and psychosocial processes is imperative. Several discussion boards and support groups for teens and parents of children with diabetes exist and might be very helpful in coping and supporting adaptive strategies.
Persons with Disabilities
The American with Disabilities Act requires that diabetes educators provide reasonable accommodations to people with disabilities in response to their particular individual needs.52 The educator must acknowledge the needs assessment and plan appropriately to accommodate the patient’s learning needs. Diabetes educators must provide patients with a comprehensive, individualized education program that takes into consideration the patient’s disability and its impact on the learning process.53 The educational content should be consistent and equal to the information provided to those without any disabilities or functional limitations. The only variance will be the teaching methods, tools, and/or mode of delivery. In addition, the educational materials should incorporate disability-specific factors in all phases of diabetes education. For example, patients with limited or no sight may need to have instructions in Braille or special talking books.
There are a variety of adaptive devices for the visually impaired available in the market such as talking glucometers, insulin pen devices, and others. There are also agencies for the blind and visually impaired where patients can be referred to for assistance. Deaf and hard of hearing individuals experience communication barriers that impact on their processing of health-related educational information or the ability to carry out necessary tasks. Providers should be somewhat knowledgeable about deaf culture and barriers to communication and refer patients to an educator who is readily accessible and qualified to meet the needs of deaf and hard of hearing patients. This includes obtaining an interpreter fluent in American Sign Language to provide translation at the time of patient encounter. Other forms of visual communication should also be used such as reading materials and pamphlets, if the patients are literate to the English language. In a Harvard medical school study, participants who were deaf or hearing impaired suggested that clinicians ask patients about their preferred communication approach (e.g., lip-reading, sign language, writing notes). In an attempt to assess understanding of education provided, the educator should have the patient use their form of communication to either repeat the key information and/or perform return demonstration. At the end of the chapter is a list of websites for persons with disabilities.
Behavioral Aspect of SMBG Monitoring
At present, self-monitoring of blood glucose (SMBG) is recommended for all patients with diabetes, especially those who use insulin. It is recognized as being useful in sensitizing the patient to the advantages of diet control and physical exercise, determining and adjusting the dosage of medication at the beginning of treatment or during a dosage change, and monitoring glucose control during acute illness. Most important, glycemic target goals should be set by both patient and provider. This goal has to be clearly spelled out and assessed periodically. Patients may be empowered by teaching them how to interpret the results of SMBG. The immediate feedback of the effect of diet and exercise on blood glucose can help motivate patients to continue to improve their behavior. Major obstacles to regular use of SMBG are financial constraints, physical discomfort, lack of motivation, depression, and inability to interpret and respond to results. Oftentimes, patients do not see the importance of monitoring, so the educator should review the results with them and provide positive reinforcement at every encounter. Giving the patient clear instructions, providing them with the necessary skills to perform the task, and exploring with them how to incorporate this to fit their daily life may help to improve adherence to SMBG.
The individual’s preference for teaching–learning experiences in diabetes self-management is a major consideration in planning the diabetes education sessions. Sessions may be conducted in a group, individual settings, or may even be self-directed. Learning styles vary from one person to another. A combination of different modalities is frequently used to enhance the learning process. Learning styles may be didactic (lecture) or participatory (group discussion), or a combination of both. To present materials the educator may use a variety of media or techniques such as audio/visual materials, high tech interactive or noninteractive computer programs, Internet, games and simulations, case studies, or vignettes, as appropriate. The Internet is the fastest growing information medium with potentially great impact on health education.
The demographics of a typical Internet user are believed to closely resemble an average American. As more people take greater initiative in their health care, many use the Internet to explore options and learn about new developments and research about diseases. Although research60 suggests that there is a slightly greater interest in use of Internet in younger population it was also found that many other patients with diabetes without population it was also found that many older patients without previous Internet experience are willing to take part in Internetbased self-management programs if barriers to participation are minimized. There are a number of advantages of the Internet as a medium of support in diabetes self-management education.
It is accessible and can potentially reach a great majority of patients with diabetes. It is low cost compared to individual or small group classes. It provides flexibility since it can be done at home at any time as many times as desired. Many Internet sites provide information (some interactive), linkages with other related sites, and forum for people to interact with one another and share experiences. It is not a remote occurrence for a physician to have patients coming in to their office with printed materials about diabetes collected over the Internet. The role of the physicians and diabetes educators in such a situation is to provide the person seeking knowledge through theWorldwide Net the ability to sift through massive amount of information.
Methods to Decrease Literacy Demands
People who have low-literacy skills are able to learn diabetes self-management skills. Teaching strategies need to be adjusted to enhance learning. The atmosphere has to be nonthreatening for the patient. There are certain things to remember when dealing with patients with low literacy.
• Do not overload patient with information. Provide only the essential information the patient needs to do self-management.
• Make instructions brief and simple. Use simple layman words. Avoid medical terms.
• Introduce one concept at a time. Use common analogies to explain concepts. Provide examples to enhance explanation.
• Avoid distractions and interruptions as much as possible during the learning session.
• Introduce one change at a time. Make sure that patient understands and is comfortable with the change before introducing another.
• Use a variety of media to present information. Enhance instructions with use of pictures, charts, models, audiovisual aids, etc.
• Remember to evaluate patient’s understanding frequently. Encourage patient to ask questions or seek clarification as needed.
• Reinforce learning through use of drills, practice exercises, and experiential learning. Use patient’s real-life problems to facilitate application of concepts learned.
Paraphrasing is one of the earliest methods to evaluate patient understanding.62 The patient is asked to explain his/her understanding of the information. This method allows both the patient and the physician to have an interaction about the material taught. The patient is able to clarify the information as needed. The physician is able to assess any gaps in information or areas of misconceptions and provides immediate feedback. Skills demonstration such as insulin injections, blood glucose testing, meal planning, etc., provides knowledge to the physician about patient’s use of the proper techniques. More importantly, the physician is made aware of the patient’s psychomotor impairments that may interfere with the proper performance of the skill. For example, a patient with rheumatoid arthritis may have difficulty in handling the syringe or the glucometer; a patient with poor eyesight may not be able to accurately draw up the proper dose of insulin.
This would provide the opportunity for the physician to recommend some adaptations to ensure safety and accuracy or refer the patient to the educator for further counseling. There are a variety of adaptive devices available to help patient cope with their disabilities. The physician should ask for frequent feedback from the patient to assess understanding of information. The patient is encouraged to ask questions to enhance his/her knowledge. The physician also asks questions to verify patient comprehension. Questions answerable by yes or no should be avoided. The examples include questions such as “Do you understand?” or “Do you know how to do this now?” Most patients would answer these questions affirmatively because they may be embarrassed to admit lack of understanding or they do not want “to bother the busy physician.” Examples of questions that yield more information about patient comprehension are “Explain to me why. . .” or “show me how. . ..” Patients who do not know the answer to these questions would feel free to tell the physician to repeat the instruction or procedure if they do not understand. In this age of electronic communication, feedback may be done through other means such as e-mails, text mails, chat lines, etc. These formats facilitate communication among patients and between patients and their care team at any time and place. Patients can e-mail their provider or team for questions, comments, or feedback about their diabetes management.
They can network with other patients to learn through their experiences. It is reassuring for many to feel that their team or partners in care are just an e-mail or phone call away. Because learning diabetes self-management encompasses more than knowledge acquisition evaluating behavior change leading to a health lifestyle is the ultimate measure of success. There are several methods to measure behavior change. A direct measure is actually observing change in behavior such as self-monitoring of blood glucose, engaging in physical activities regularly, and consuming healthy diet. In some instances, the physician or educator may have to rely on self-report, which decreases the reliability and validity of measurement. Indirectly, the effects of behavior change can be measured in terms of metabolic outcomes such as improvement in HbA1c, blood glucose, blood pressure, lipid levels, weight loss, etc.
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