Diabetes self-management education: getting the patient’s perspective

CHU Félix Guyon
Saint-Denis, La Réunion

Diabetes self-management
education: getting
the patient’s perspective


Interview with X. Debussche, France

Diabetes self-management relies on the patient’s ability to perform a complex self-care routine that includes monitoring blood glucose, taking medication, making healthy dietary choices, and participating in regular physical activity. Effective communication between patients and care providers is critical to achieving positive health outcomes. Beyond the patient- provider perception gap, diabetes self-management support among high-risk patients entails considering together the contextual heterogeneity of patients, the chronic and long-term dimension of self-management, the organizational aspects of care and support, and the health literacy profiles as well as responses to people’s health literacy needs. Adherence to preventive care results from the adaptive trajectories of patients who seek explanations, legitimization, ways to cope with therapeutic measures, access to information, but also from education and services through interactions with trusted caregivers and professionals.

Medicographia. 2016;38:88-91 (see French abstract on page 91)

How can we reduce the gap in perception of diabetes care concepts between patients and providers
Diabetes is a chronic disease. As such, it needs to be managed from a longterm, preventive, and integrative perspective. Chronic disease management is a durable constraint that demands coping skills on the part of patients. Patients and health-care professionals do not share the same perception of the disease, for the latter is both eminently social and pathophysiological. Moreover, this perception gap persists even in the case of demographic or cultural proximity. Most health professionals oppose rational, normative biomedical recommendations to meaningful individual stories, interpretations, and experiences. Yet long-term disease management relies not only on evidence-based facts, but also on individual, social, and contextual elements as part of a shared decision process between patient and health professionals.1

The communication skills of health professionals are key to responding to patients’ needs. Openness, active listening, timely advancement, and respect for the singular trajectory of each individual patient are crucial in helping patients self-manage the disease. Health professionals must focus primarily on the patient rather than on medical considerations, pathophysiology, or even the disease itself. The patient needs to trust and rely on an expert professional, but he/she must also be allowed to proceed at his/her own pace. It must be kept in mind that self-management education (SME) is primarily aimed at maintaining and improving patients’ health and quality of life. The danger of focusing primarily on behavioral changes during the medical encounter lies in directly linking behavior to biomedical indicators. This may result in patients’ defensive reactions towards health professionals, and hence in the negotiation of responsibility rather than in the consideration of patients’ health practices.2 The person with diabetes is at the center of a whole support and educational process. He/she is in charge of carrying out the hard work of managing his/her illness day by day. The role of caregivers and educators is to make this work feasible and easier.3 The primary objective of SME intervention or action is to provide individuals with the items, resources, and means that will enable them to progress in their own manner, in the long—or at least the short or medium—term.

What additional measures must be taken with highrisk populations presenting specific barriers to diabetes management (eg, the elderly, the economically disadvantaged, or cultural minorities)?

Specific measures must be implemented with high-risk populations; this can prove demanding for relatives, health professionals, and health-care structures and teams. Four key items can be individualized: the contextualization of SME; the long-term and chronic dimension of self-management; the health literacy of people with diabetes; and the organizational aspects of health and care systems and facilities.4

Contextualization of self-management education
Whenever possible, SME should encourage the expression of individuals’ social and cultural microcontexts, and take into account the advantages and constraints of patients’ environment.5 The educational encounter rarely takes place in the ordinary contexts in which an individual’s health is threatened. Still, it seems necessary to negotiate the properties of the environment in which any action is to be implemented. For chronic diseases, the individual must cope with the uncertainty of the “why” and, especially from a medical point of view, with what directly affects his/her life: symptoms, treatments with uncertain effects, and hypothetical durations.6 Thus, in an SME situation, patients’ sociocultural and “ordinary” contexts should, as far as possible, be rendered legitimate, visible, and/or manageable (through photographs, prints, diagrams, flyers, medication boxes, material, food, etc). The means deployed to achieve this must be adapted to the heterogeneity of the cultural environment, and must represent the diversity of the population (housing, food, clothing, religion, languages, etc). The learner-patient may continue to handle and develop his/her own context and environment, identifying difficulties, facilities, barriers, resources, supports, etc, through his/her practical experiences. The role of peers (or expert patients) ought to be stressed here. It can be considered in terms of experiential and contextual development, thus creating and promoting a space for decision-making and taking into account complex interactions beyond the single patient-caregiver relationship.7

Chronic dimension of self-management
SME must integrate both the duration of the chronic disease and the need to consider actions over the long term. The decision- making process is personal, but is then confronted with daily social interactions. Indeed, decision-making is potentially scalable, unfixed, and not subjected to the judgments or the authority of health professional(s). The long-term “work” of patients constitutes the central challenge. The decision behind an action remains the patient’s property, even as it is encouraged by the caregiver or educator to improve the patient’s psychosocial skills. The continuities and disruptions of the patient’s trajectory have to be acknowledged by healthcare teams. Whatever the disruptions, health professionals and resources remain crucial to this trajectory.

Health literacy
Health literacy refers to the characteristics and social resources needed for people to access, understand, use, and appraise information in order to make decisions about their health. In several studies, lower functional health literacy scores, measured as reading ability and numeracy, have been shown to be associated with higher avoidable hospitalization rates, decreased ability to self-care, and poorer health outcomes. Beyond functional literacy and numeracy skills, health literacy includes: (i) interactive skills (cognitive and social skills to participate actively in daily activities, apply new information to changing circumstances, extract information, and deduce the meaning of different forms of communication); and (ii) critical skills (analysis of critical information and use of this information to better control life events and situations), which are often largely overlooked. Health literacy tools must integrate the measurement of ability to engage with health-care providers, navigate the health system, or critique health information. Instruments like the Health Literacy Questionnaire, which explores 9 domains of health literacy via 44 items, has been developed in several languages and is a useful tool for health-care teams and structures.8

Organizational aspects
SME should be considered in its eminently social dimension. Three levels of action can be individualized: microsituational (the educational encounter: patient-caregiver relationship, individual session, educational group); mesocontextual (health professionals, teams, structures, and facilities); and macrocontextual (health policy context; recommendations; community in its religious, cultural, linguistic, and economic dimensions). at the microsituational level, team resources, potentialities, and advances are key to the progress of health professionals.

But patient trajectories must also be given a space of freedom, even if this results in nonadherence to educational actions themselves. The need for structuring may interfere with the heterogeneity of patient pathways. Objective-based programs (tailored interventions, action plans) may reach their limits here in terms of patient self-management and support.4 SME sessions and programs must be better developed and outlined beforehand by multidisciplinary health-care teams.5

At the mesocontextual level, the continuity of the care process across health structures, facilities, and professionals is most often lacking, or else reduced to its simplest form. Chronically underserved patients need easy access to medical, educational, social, or psychological expert professionals. The German Diabetes Management study in Germany and the Chronic Care Model study in the US have shown encouraging results by integrating the primary care physician at the core of the care process. However, these formalized systems may have the perverse effect of rendering dominant the expertise of practitioners, without really responding to the expectations of patients, who then become passive subjects “under supervision.”9 The effects of new organizational implementation have yet to be determined in the context of SME.3

To become active partners, patients need easy and flexible access to trusted and expert professionals who respect both their knowledge/opinions about their disease and their preferences. If this accessibility and the visibility thereof are lacking, patients’ needs will be expressed in emergencies, which provide medical and social assistance, in particular to the poorest. Health (and social) system simplification, coordination, and visibility are essential to ensure real access and synchronization between self-care and support from professionals.3

At the macrocontextual—institutional and political—level, the challenge of chronic disease requires a multifaceted response to trajectories, needs, and complex contexts. Overall, existing interventions and organizations only modestly impact the health of chronic patients and the access to and use of adequate services. Overly strict recommendations or uniform structuration may conceal the need for individual and social work on individual trajectories. Program and curriculum structuring is important in itself, but its effects remain unclear and poorly known.3,7 an important research initiative has yet to be developed on these issues. approaches must integrate patients, professionals, and health system organizations to better reflect the needs generated by the chronic disease. assessment of health literacy needs can guide the implementation of specific responses, such as the one developed in Australia through the Ophelia program.10

What is patients’ perception of risk and risk assessment, and how are diabetes risk assessment tools implemented in practice?

The chronic and progressive nature of the disease is underestimated, and diabetes complications are not well known by most people with diabetes, whatever the duration of the disease. People with low educational levels or low literacy skills cite complications less frequently. Patients with diabetes generally do not consider themselves sick until pain or complications actually occur. The notion of disease as a medical concept does not correspond to the condition of diabetes. Diabetes is not really considered a disease like any other: it is a long-lasting and silent illness, potentially serious, but hard to understand and describe. Despite its seriousness, it is usually taken into consideration very slowly.4,7 In fact, individual progress from diagnosis to patent disease and complications is remote from the biomedical process.

Risk assessment for the prevention of complications is for the most part poorly understood by patients. Several risk assessment tools have been developed; yet they are seldom used by physicians in everyday medical practice. The objective of these tools is to guide health professionals in determining the level of treatment intensification. But they could also be useful tools to help patients self-manage the disease and cope with self-care preventive activities via risk communication strategies. Individuals need to better understand the multiplicity of risk factors. Risk information can improve accuracy of risk perception as well as increase the intention to initiate prevention strategies.

In SME interventions aimed at preventing complications through risk assessment, subjects have to look at health and well-being, as well as disease risk. Modifiable (rather than nonmodifiable) elements must be mobilized and worked on by patients (bloodglucose and glycated hemoglobin, blood pressure, lipids, weight and body mass index, waist circumference, smoking, etc), and actions that may have a positive effect on these elements have to be identified, analyzed, and compared (physical activity/inactivity, diet, medication, etc). Before realistic actions can be decided upon, this work has to be completed by confronting the elements of real life: social environment, cultural embeddedness, financial resources, social and familial support, stress, geographic context, medical and allied support, etc.5

How can patients’ perception of treatment burden lead to adherence and to subsequent net benefits in terms of glycated hemoglobin?

Adherence to treatment means far more than medication, diet, and exercise compliance.4 While treatment goals in diabetes mainly relate to maintaining a correct glycemic level, patients identify a variety of constraints that influence treatment—including work, financial aspects, and constraints related to housing, family, dependents, insecurity and financial difficulties, gender roles, etc. Chronic patients must manage the disease (symptoms, diagnosis, management of “events,” etc), everyday life, and the “biographical work” necessary to rebuild their identity. at the onset of disease, they need and seek explanations and legitimization, but are rapidly confronted with the impact of the therapeutic process. Hence, they have to develop adaptive resources through coping skills (tolerating the effects of the disease and maintaining self-confidence), strategy (alleviating the effects of the disease), and style (responding to the disease and to therapeutic procedures, for example by isolating themselves or by emphasizing the illness as a component of their social identity).7 as part of self-care activities, individuals look for a correct balance between health and well-being. When the search for better health does not affect well-being, adherence to dietary and medical advice is not a problem.

Beyond the difficulties associated with the adverse events and effectiveness of the drug, nonadherence is in line with a process of self-regulation that includes testing, the control of dependence, destigmatization, and the development of a “pragmatic practice.” Social and family support is important for the chronic patient, although it may have ambivalent effects on the development of individual strategies for coping with the disease. Most patients are, in fact, fully aware of medical recommendations in terms of diet, physical activity, self-monitoring, and treatment. The importance of understanding the complex factors involved in human experience and their relation to diabetes management has been highlighted in the case of ethnic or cultural minorities, for whom structural and material barriers—as opposed to beliefs and behaviors, as is usually suggested—are the most important factors in explaining poor adherence. Finally, multiple medications or the occurrence of comorbidities often raise doubts about the safety of the drug mix and about the complexity of drug-specific instructions. In this context, the individual’s position and suspicion towards the medical professions in general, and towards pharmaceutical companies in particular, may have an impact. The nonanticipated chronic dimension of the illness may cause frustration and suspicion of treatment ineffectiveness (or that the effects of treatment are potentially more deleterious than beneficial), leading to distrust of medical discourses in general.

The concept of adherence can thus be considered from a perspective that gives full significance to patients’ heterogeneous trajectories and therapeutic strategies, but also to medical explanations of the disease, to social interactions and contexts, to ownership and understanding of the mechanisms and phenomena involved, and to the relational and organizational aspects of the health system. Developing and structuring SME actions will benefit from integrating the complexity of these various trajectories and interactions. ■

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Keywords: adherence; diabetes; high-risk population; perception; risk assessment; self-management education;