With more than 20 million Americans diagnosed with diabetes, and that number rising as the population ages and obesity becomes more prevalent, the need for diabetes education and self-care is urgent. To examine the state of the science on the role of nursing in promoting diabetes self-management, an invitational symposium was convened in Philadelphia on September 15 and 16, 2006.
Approximately 50 nurses and others concerned with diabetes attended the symposium. After hearing presentations by the authors of the articles in this publication, attendees worked in groups of seven or eight to determine how the nursing profession might take a greater role in promoting diabetes self-management, and which of those paths should take priority. They looked at several areas, beginning with research. They then identified barriers to patients' successful self-management of the disease, as well as strategies for overcoming them. The work continued after the conference, with the development of an agenda for nursing research and for instituting the most promising solutions to the major barriers to patients' self-care. This article and the tables in the executive summary (see page 6) summarize the output of the symposium participants.
Working in small groups to identify priorities for nursing research that could lead to improvements in diabetes self-care, the attendees delineated four broad areas of study: the patient, the health care system in general and diabetes education in particular, specific nursing roles and interventions, and diabetes education by nonnurse health care professionals.
Research on the patient
One group of participants asked a fundamental question: what is self-management? Working independently, another group seemed to answer it: self-care is an outcome. This definition led to discussion of the factors that most affect self-care, the skills patients require to accomplish it, and how much and what kind of support they need and want.
Many individual characteristics affect a patient's ability to respond to nursing interventions and to manage diabetes. Because comorbidities are common, for example, research is needed to identify which nursing interventions are most effective in patients with comorbid conditions. Another area needing research is the effects of language and health literacy on self-care. Attendees also suggested that there is a need to determine whether outcomes vary according to who establishes the patient's self-care goals—that is, the patient, nurse, or diabetes educator.
The patient's emotional response to diabetes—an important factor that influences the success of self-care but is rarely assessed by nurses and other clinicians—was a focus of this symposium. Distress, anger, fear, and frustration are common and can have an impact, as can clinical depression. One group suggested that the effects of guilt should be more closely examined and then asked how providers contribute to this guilt.
Research on the health care system
The Chronic Care Model is widely recognized and used in promoting self-management and improving outcomes. (For a discussion of the model, see page 14.) Symposium participants called for more research into the nurse's role in the use of this model. They wondered, Does the model indicate a need for changes in health care policy and systems? Does it address the issue of reimbursement of nurses as case managers, for example, in diabetes education and intervention? Is there evidence of the model's cost-effectiveness? Will more research help to adapt the model for better clinical use?
Because nursing visits with patients are often brief, could research identify ways to make visits more effective? For example, the efficacy of individual versus group visits is an area in need of study. What do nurses need to know to improve the health outcomes of patients with diabetes? What data are needed to support the advancement of policy changes that will provide nurses with enough work hours to adequately teach patients? Which formats are most effective for patient education? What are the roles of various clinicians—the NP, diabetes educator, office nurse, medical assistant, community worker? Which model is most cost-effective? The cost-effectiveness of diabetes education was identified as a significant research priority.
One group considered primary care as a venue for supporting self-care in patients with diabetes. Its members recognized a need for research on the attitudes primary care providers hold toward diabetes education and on the role primary care nurses have in educating these patients.
Research on nursing interventions and professional education
Attendees who are nurses identified several research priorities concerning their work. Chief among them were identifying the definitions of self-care used in nursing practice, the assessment tools nurses can use to guide their practice, and the nursing strategies that most effectively, and cost effectively, support ongoing self-management. Also in need of review are the effect nurse-directed interventions for diabetes self-management have on outcomes, the best ways to translate research findings into practice, and the best vehicles for disseminating research findings.
Primary prevention of diabetes did not make the list of top research priorities, but many attendees said it was a serious concern. Some suggested that research is needed on the community-nursing role in primary prevention.
Nurses also identified several gaps in their professional education. One group noted that nurses should learn more about how research is conducted and encourage more nursing research. Another group asked about the effects of clinical education—in particular, whether nurses who have a greater understanding of what life with diabetes is like achieve better outcomes and have greater compassion for patients.
Research on extending patient education to nonnurse health care professionals
Nurses play an essential role in educating patients on self-care, but a disease as widespread as diabetes also requires the participation of community workers and other nonprofessionals to improve outcomes. It's important to gather evidence supporting the effectiveness of such community health workers and to identify what diabetes-education skills they need. The roles of nurses as supervisors and collaborators in patient education should be further addressed.
Another focus for research is how the community environment can both promote and impede self-care. For example, how do the availability of healthful foods and the options for safe exercise affect diabetes self-management?
BARRIERS—AND HOW TO OVERCOME THEM
Later during the symposium, attendees identified barriers that may keep patients from successfully managing diabetes. Working in the same small groups, they first listed every barrier that came to mind and then selected the top three. When the groups compared their lists, common themes became evident. For example, the complexity of managing diabetes struck several groups as a major barrier. The difficulty some patients have in accessing health care providers was another recurrent theme. As in the discussion of research needs, nearly every group identified as a prime barrier to optimal care either the lack of evidence for nursing's effectiveness in improving diabetes self-management or the difficulty of identifying and applying evidence-based approaches.
Strategies for overcoming the barriers were then discussed. Later, the barriers were refined based on the strategies proposed to address them. The results are summarized in the table on page 8 and discussed in the remainder of this article.
"Difficulty in navigating the health care system" was often cited as a barrier. This problem relates in part to the failure to automatically link patients with diabetes to self-management educational programs. It also results from the health care system's focus on acute, episodic care as opposed to chronic, comprehensive care and the time limitations this construct imposes on the patient–provider encounter.
Several strategies for helping the patient navigate the health care system were discussed. Because the Chronic Care Model is the basis for many successful diabetes self-management programs, it was suggested that it might hold the key to negotiating health care services. A nurse case manager might assume the role of patient navigator. One group suggested that patients be taught how to be informed patients and to navigate the system effectively.
Automatically linking a patient newly diagnosed with diabetes to a self-management education program could make navigating the health care system much easier for the patient. One solution offered was to make referral to a diabetes self-management education program within six weeks of diagnosis a standard of care; a code could be used to track continuity through the inpatient and outpatient systems. Well after diagnosis, patients may need self-management education and support. Any time the HbAIc level is too high, symposium participants suggested, the patient will need to be evaluated for medication changes and educated in self-management techniques. Nurses—already the primary patient educators—should also become decision makers and policymakers in their own institutions and professional organizations. The role of educator and advisor in diabetes self-care can extend beyond the health care professional to people working in community services and related organizations.
Patients and professionals alike complain that insufficient time is available for patients to learn how to manage a disease like diabetes, especially if the patient has comorbidities. Strategies participants offered for maximizing the educational impact of the patient's visit included using time spent in the waiting and exam rooms for educational activity. It was suggested that to use the time optimally, the patient's interests, concerns, wants, and needs should be elicited. Use of technology, such as computerized instruction, also could be advantageous.
"Thinking outside the box" will help patients and providers make the best use of time; for example, the patient could see multiple providers during a single visit, although this would require reimbursement policies to change. Rethinking the role of each member of the health care team could help to ensure that all members of the team are working to the best of their abilities. Flexibility is important, because what works well in one setting may not be optimal in another. The goal should be to deliver the best care in the time available in a cost-effective manner.
Improving attitudes and approaches to patient education
A fundamental concern raised at the symposium was that neither the health care system nor payors value patient education. Yet it's at the heart of diabetes self-management. All stakeholders—nurses, primary care providers, other health care professionals, policymakers, payors, patients, and the general public—need to be made aware of the value of patient education for successful diabetes self-management. Collecting research that proves the cost-effectiveness of patient education is instrumental to changing the current attitude. When all providers—both nurses and other diabetes educators—are routinely reimbursed for patient education time, including nonclinical time spent on such things as follow-up telephone calls, the value of patient education will have been recognized.
The components and processes of diabetes self-management education, as well as desired outcomes, need to be clearly defined. Evidence-based approaches to the delivery of educational programs and self-management skills have to be developed and disseminated. Standardized educational approaches must be flexible enough to allow for a patient's individual differences, such as her or his cultural background or level of health literacy. Developers of educational materials should tailor their materials to those with low health literacy. The teach-back method, in which the instructor asks the patient to repeat the information or demonstrate its use, is a particularly useful approach for teaching health care. Programs and strategies for supporting diabetes self-management over time also need to be developed and evaluated.
Given the complexity of diabetes education and the time constraints common in traditional patient care settings, alternative approaches to teaching diabetes self-management may be useful. The effectiveness of computers in patient education merits evaluation. Support groups may be helpful in addressing the myriad psychosocial issues associated with diabetes, especially when they include people of a similar ethnic background.
The participants agreed that the diabetes education workforce needs to be expanded. A variety of strategies will help to ensure that a well-educated cadre of diabetes educators is available, now and in the next generation. Credentialing, competencies, and continuing education will ensure that diabetes educators are of high quality. Postgraduate mentoring programs are a good way to teach nurses to be diabetes self-management educators. Because patients with diabetes are most often seen in primary care settings, primary care providers also need to be educated about diabetes self-management. Ideally, professional education will take place within an interdisciplinary framework and include practical experience in diabetes clinics.
Addressing research-related gaps
Some symposium attendees said that little evidence shows the effectiveness of education in improving diabetes self-management. Another significant gap is the lack of studies that examine the impact of evidence-based approaches on promoting self-management. Others felt that some evidence exists, but that it has not been adequately disseminated and accepted by payors or translated into evidence-based approaches to self-management.
To improve skills in conducting and applying research, nursing schools should build research into the curriculum. Continuing education programs and the annual meetings of professional groups also can promote a research agenda. Creative mechanisms for disseminating research need to be developed to enable nurses in practice settings to transport research findings into their unique setting. Journal clubs can help nurses hone their abilities to evaluate and use research.
Research needs to be translated into practical, usable information at the levels of both the professional nurse and the patient. Linking schools of nursing that excel in research to those with strong clinical programs will facilitate the translation of research into practice. Once research identifies which approaches to diabetes self-management are effective, diabetes educators need to learn about and implement them.
The symposium attendees set out specific priorities for research in a separate process, as discussed above. The need for research on both the effectiveness and the cost-effectiveness of nursing in improving outcomes through diabetes self-management education was often cited as a priority.
With diabetes already a major health care problem, now is the time to act on these priorities and strategies. Research, changes in the health care system, and creative, evidence-based approaches to patient and professional education can break down the barriers to optimal nursing promotion of diabetes self-management.