Belinda P. Childs, ARNP, MN, CDE, BC-ADM,1 Marjorie Cypress, PhD, MSN, RN, C-ANP, CDE,2 Geralyn Spollett, MSN, C-ANP, CDE3
1Great Plains Diabetes Center, Wichita, KS. 2Adult nurse practitioner and CDE, Albuquerque, NM. 3Yale Diabetes Center, New Haven, CT.
Nearly one-half of all Americans have or are at risk for developing diabetes.1 Nurses have played an integral role in providing diabetes care and education to individuals with diabetes and their families for years. With the increasing prevalence of diabetes, the nurse’s role will be pivotal in providing individuals with diabetes with the knowledge, skills, and strategies required to prevent acute complications as well as reduce the risk of long-term complications. Nurses in all settings contribute to the care and education of individuals with diabetes. Equally important is the role of all nurses in all settings to promote healthy lifestyles to reduce the growing prevalence of diabetes.
This chapter not only discusses the evolving role of the diabetes nurse specialist but also considers the roles of the nurse in a variety of health-care settings.
EVOLUTION OF THE DIABETES NURSE
Nurses have been integral in providing diabetes care for more than 100 years. As early as 1914, even before the advent of insulin, nurses carried out Dr. Frederick Allen’s undernutrition therapy, also known as the starvation diet, to prolong a patient’s life by reducing glucosuria and acidosis. By 1915, the New England Deaconess Hospital (NEDH) opened the William Nast Broadbeck Cottage, dedicated to the care of patients with diabetes.2 The nursing school affiliated with the NEDH was unusual for its time in that it had a sound education program, with dedicated nursing instructors, as well as several Harvard Medical School physicians who participated in classroom education. These nurses, well-trained in a rigorous program, were the first to conduct diabetes education programs for patients and their families, as well as educating other nurses and physicians who were interested in diabetes care.
Elliot Joslin, MD, originally a general internist, developed a specialty in the care of individuals with diabetes and saw a potential role for nursing in patient education. He believed that with the proper education, patients with diabetes would be able to care for themselves. In his book, The Treatment of Diabetes Mellitus, Dr. Joslin addressed the education of nurses in a section entitled “Directions for Nurses in Charge of Diabetic Patients.”3 He believed that educated nurses could be responsible for carrying out the treatments then associated with diabetes care, including measuring urinary glucose and albumin, helping patients with diet management and exercise, and reducing stress through diversions.
Joslin’s overall philosophy of diabetes management stressed the empowerment of patients to care for their own diabetes and for nurses to become the doctor’s associates in reaching this outcome. Joslin continued to stress the importance of this alliance with nursing in his second edition of The Treatment of Diabetes Mellitus (1917) and proposed extending the role of the nurses through diabetes education and treatment programs into the outpatient setting.4He felt that developing a specialty area in diabetes offered a new career for nurses. In fact, he expressed utmost confidence in these nurses in his statement that “a well-trained nurse was of more value than the patient’s doctors.”4 As a strong advocate of this team approach to diabetic management, Joslin also wrote A Diabetic Manual for Mutual Use of Doctor and Patient in 1918.5
With the discovery of insulin came the need to further investigate its use in patients with diabetes. Joslin and the facilities associated with the William Nast Broadbeck Cottage, provided an ideal setting for research into the use of insulin. By that time, the Joslin-trained nurses had the basic diabetes skill set necessary to make them well suited to assist in the first of these clinical trials. Joslin developed training sessions for self-injecting insulin, and the nurses participated in this patient education. Nurses kept meticulous records of the trials, thus contributing to the initial research on insulin use.
The patient to receive the first commercially available injection of insulin in the U.S. was a nurse, Miss Mudge. She had been treated with the starvation diet for 5 years, wasting away to only 69 lb. After 9 months of insulin treatment, she gained back 31 lb.
Harriet McKay, NEDH class of 1922, after developing expertise in diabetes, including insulin management skills, became one of the earliest visiting diabetes nurses. McKay gave personal diabetes nursing care to a wealthy 14-year-old boy. During the 7 years that she cared for her patient, she learned how to regulate insulin for activity and meals and she was so successful in her care that the young man was able to engage in a healthy active life.2
Once insulin became commercially available, the need for educated nurses in diabetes care increased both for the self-care education of patients as well as for daily support and guidance. Nurses participated in the development of protocols for diabetic ketoacidosis, and other complicated medical and surgical problems related to diabetes. They worked on the foot care team changing bandages and applying antiseptics. Additionally, they continued to conduct patient education classes that addressed specific components of self-care management, such as testing urine for glucose, understanding dietary carbohydrate and how to use a scale for food measurements, adjusting insulin for food and activity, and learning how to avoid diabetic coma.
Lovilla Winterbottom, RN, and NEDH class of 1927, became what was called a wandering diabetic nurse for children with diabetes who could not afford a private-duty nurse. Her role was similar to a modern visiting nurse in that she not only made home visits shortly after hospital discharge to establish a routine for diabetes care, but also made periodic follow-up visits. In some instances, she made contact with the patients’ teachers and visited the schools. Winterbottom also saw diabetic children in five different residential summer camps. If she was not busy making home visits, Winterbottom instructed hospitalized patients both individually and in groups in diabetic self-care. She was available to help children with diabetes in any home, regardless of ability to pay, because Joslin’s friends supported this nursing position through a private fund.6
In 1929, the American Journal of Nursing published an informative article entitled “The Care of the Diabetic: As Carried Out at the New England Deaconess Hospital.”7 Many of the tenets espoused in this article for the treatment of diabetes are similar, if not identical, to 21st-century standards. The article outlines the predisposing factors to diabetes; hospital management of the disease; hygiene of the feet, skin, and teeth; precise dietary preparation and its relationship to the insulin ordered; and the content and teaching methods used in patient education classes. Additionally, boosting morale and keeping the patient optimistic are seen as part of diabetes care. The article also instructs the diabetes nurse to have a physiotherapist teach bed-bound patients necessary exercises. In every instance, the nurse plays a central and essential role in giving care and directing the patient toward diabetes self-management.
In 1936, an article entitled “Teaching the Diabetic Patient” also was published in the American Journal of Nursing. The author of this seminal article, Iris Langhart, RN, addressed the need for individualization in patient education. She wrote, “when the teaching of such [hospitalized] patient is under consideration, it is more a question of what sort of person he is, what kind of work he does, and how he lives, than how severe his diabetes.”8
Langhart then emphasized that a team approach is needed:
“In the formation of any unified teaching plan, all services must be drawn together in an effort to preserve the identity of the patient and his individual problem and at the same time conserve the time and energy of those who are to participate in the teaching program.8”
The team was coordinated by the head nurse who brought the various disciplines together—physician, dietitian, and nurse—to enact the teaching plan developed by the physician who was in charge of the diabetic clinic, as well as representatives from the dietary department and the medical teaching supervisor. The hospital placed the mantle of responsibility on the head nurse’s shoulders to oversee the unification of the teaching effort and ensure that the complete piece of teaching was done. In this way, the nurse became the coordinator of patient education and long-term care.
The nurse also became the link between the patient and the registered dietitian, “for although the major portion of the teaching about diet is to be done by the trained dietitian, the nurse is the constant interpreter of the diet as it is served.”8 In this role, the nurse assisted the patient in applying education to the practical everyday setting. Furthermore, the nurse was keenly aware of the psychological problems facing the patient and was able to assist the patient in “rearranging his life to make diabetes a dynamic problem and to refurnish him with the will to live his life as normally as possible as part of the teaching duty.”7
To prepare the nurse for this task, a class for teaching patients with diabetes was added to the nursing curriculum. It included not only the rudiments of diabetes education, such as instruction about how to perform a urinalysis and how to prepare and administer insulin, but also actual patient case studies that illustrated difficult teaching scenarios.
In many ways, the methods for teaching diabetes self-management have not changed significantly from those espoused in 1936. The nurse educator presents material in small segments over a period of time, knowing that although a plan for education is in place, the individual needs of the patient take precedence. The teaching plan should be considered suggestive and can be modified as necessary.8 Patients learned about insulin injections and urinalysis through a written guide and hands-on demonstration. The nurse educator then observed and corrected unsafe techniques, as needed. In some cases, a well-informed, experienced patient assisted a newly diagnosed patient to learn about diabetes self-care, benefiting both patients through mutual support. In modern terms, this would be called peer-to-peer support, and it remains an important part of diabetes education. Family involvement in the care of the person with diabetes included participation in education sessions, such as nutrition therapy and meal preparation, administering insulin, and urine-testing methods, all of which are still taught or reinforced by nursing staff in the 21st century.
The early diabetes nurse educators, as well as pioneering nursing teams and clinicians, put down strong and enduring roots for the continued growth of nursing’s essential role in diabetes management and important developments in patient care.
For years, hospital staff nurses provided diabetes inpatient education, but staff nurses had to provide this support along with their many other responsibilities. Additionally, increasing technology required even more education in diabetes self-management. The role of the specialized diabetes nurse educator emerged, with an expanding role to coordinate and promote care by acting as a resource person for education materials, and as this role emerged, these nurse educators also served as role models for expert clinical practice.9
As diabetes care moved into the ambulatory setting, the role of the diabetes nurse became increasingly important. The diabetes educator was one of the first nursing specialties to develop and has served as a model for specialties ever since.10 Widespread implementation of the diabetes nurse educator as well as the diabetes educator, which included other health professionals (primarily registered dietitians) was occurring in the 1970s, and in 1973, the American Association of Diabetes Educators (AADE) was founded in Chicago. In 1982 The National Institutes of Health’s National Diabetes Advisory Board (NDAB) called for the establishment of quality standards for diabetes education to create consistency for diabetes education programs and to help diabetes educators meet payers’ need for quality assurance to facilitate reimbursement.11–13 In 1983, the NDAB developed National Standards for Self-Management Education. These later became the foundation for the expanded National Standards for Diabetes Education (NSDE) and for the review criteria adopted by the American Diabetes Association Education Recognition Program, which has been administering a program to recognize quality education programs that meet National Standards for Diabetes Self-Management Education (NSDSME) since 1990.14Years later, the AADE developed an accreditation process for quality education programs that meet the NSDSME, the Diabetes Education Accreditation Program (DEAP).15
As it became obvious and necessary for health-care professionals to have specialized skills to care for people with diabetes, the AADE appointed a committee to investigate developing a multidisciplinary certification program for diabetes educators.16 In 1986, the National Certification Board for Diabetes Educators, an independent organization, began offering the certified diabetes educator (CDE) credential. The first CDE examination was in October 1986 with 1,248 candidates successfully completing the examination to become CDEs. Although the majority were registered nurses, registered dietitians (RDs) made up the second-largest group, but other professionals were represented as well, including exercise physiologists, social workers, pharmacists, psychologists, podiatrists, physicians, and physical and occupational therapists.17 In the years since, this credential has become the gold standard for formal recognition of specialty practice and knowledge. As of 2016, 19,283 CDEs were registered in the U.S.18 CDEs have become recognized as experts in diabetes education, and their role continues to expand as educators enhance their position on the diabetes team, working with physicians and providing clinical management as well as patient self-management education.18 The Diabetes Control and Complications Trial (DCCT), conducted in the 1980s and early 1990s, helped to define this more advanced role and to establish the value of the multidisciplinary team for intensive diabetes management.19 The DCCT utilized a specialized health-care team to provide intensive management to the intervention group and offered standard care to the control group. Intensive management consisted of frequent telephone calls and in-person visits to review glucose values and make adjustments in treatment regimens, including insulin dose changes, nutrition therapy, and exercise modifications as needed. Nurses, dietitians, and behaviorists were recognized as key members of the team responsible for the success of the study.20
In 1998 and in recognition of the expanded specialty of diabetes nursing and improvements in diabetes and technology, the American Nurses Association (ANA) in concert with the AADE developed the Scope and Standards of Diabetes Nursing Practice,21 which targeted the scope and standards of the diabetes nurse or diabetes educator and those of the advanced practice diabetes nurse. The standards are “authoritative statements” described by AADE for the profession of nursing; identify the responsibilities, values, and priorities of diabetes nurses; and provide a framework for the evaluation of practice. In 2005, the AADE published a multidisciplinary scope of practice, standards of practice, and standards of professional performance for diabetes educators.22 The increasing rates of diabetes and need for diabetes self-management education and management by advanced practice practitioners gave rise to the development of advanced nursing degree programs with a diabetes concentration at several universities and colleges of nursing. Advanced practice health professionals frequently working in teams (e.g., nurses, dietitians, pharmacists) have addressed an important need for expertise in diabetes management. Presently the AADE offers an Advanced Diabetes Management Certification (BC-ADM) to health-care professionals with a minimum master’s degree level of education in a relevant clinical, educational, or management field. This credential validates a health-care professional’s in-depth knowledge and expertise in the complex management of people with diabetes, including advanced clinical assessment, prioritization of complex data, problem solving, counseling, and clinical intervention and monitoring.23 This certification, however, does not permit health-care professionals to practice outside their legal scope of practice. Despite this limitation, it is obvious that the care of the person with diabetes is complex, is challenging, and requires a specialized knowledge of the disease and its comorbidities. Continuing education is necessary as diabetes research uncovers a better understanding of the disease and as new treatments emerge. Nurse researchers can be leaders in helping to define best nursing practice in diabetes care.
With our evolving healthcare delivery systems, including patient-centered medical homes, increasing telehealth services, workplace health incentive programs, and insurance case managers, the role of the diabetes educator continues to evolve.24–27 The effectiveness of some of these delivery systems have not been well studied; however, diabetes educators are well positioned to be valuable partners in these evolving health-care modalities.
Educators are moving into community settings in which they are participating with providers in shared medical visits.28 They are becoming embedded in primary care practices and are becoming key members of collaborative teams, including physicians, advanced practice nurses, pharmacists, behaviorists, and social workers. Strong teams are needed for this complex disease, with the person with diabetes as the center of the team. Diabetes educators are positioned to serve as community resources as the diabetes experts, providing professional education for less-experienced caregivers including nonspecialist nurses, licensed practical nurses, medical assistants, and community health workers.
All nurses, however, regardless of specialty or setting should recognize that they have an opportunity to enhance knowledge, support skill development, and sustain the individual by providing encouragement to obtain and maintain good diabetes control and guide healthy lifestyle behaviors. Incorporating the individual’s family and significant others is imperative.
Nurses in every setting, including the hospital, public health, case management, school health, long-term care and assisted living, home health, and college nursing, can support the individual with diabetes. A knowledgeable, skilled, and compassionate nurse can and should be a coach for the individual with diabetes. It is a complex, challenging, lifelong disease that is self-managed. If the individual has not completed a self-management education program, take the opportunity to refer the individual to a diabetes education program or diabetes educator. Identify your community resources (a list of education programs also can be obtained online).29,30
The nurse not only serves as an educator but also as an advocate. The nurse may advocate for the individual with diabetes by identifying covered medications and supplies, identifying resources for supplies and food, and providing ongoing support services and even clinical resources. Diabetes is an expensive disease. Many individuals struggle to take their medications or to obtain appropriate medical care because they lack resources.
Our health-care system continues to evolve, as does the role of the nurse. Without a doubt, individuals with diabetes will be more successful living with diabetes if they have the support of well-educated nurses and diabetes educators in every setting. Nurses are essential in the prevention of diabetes. Helping to identify people at risk and providing education and counseling is a vital role in 21st-century health care.
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