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Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm

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Abstract

Diabetes is a self-managed illness in which the decisions most affecting the health and well being of patients are made by the patients themselves. Many of these decisions involve routine activities of daily living (e.g., nutrition, physical activity). Effective diabetes care requires patients and health care professionals to collaborate in the development of self-management plans that integrate the clinical expertise of health care professionals with the concerns, priorities and resources of the patient. Collaborative diabetes care requires a new “empowerment” paradigm that involves a fundamental redefinition of roles and relationships of health care professionals and patients. The challenges of fostering the adoption of a new paradigm differ substantially from those associated with the introduction of new technology. Those challenges are discussed in this paper.

Introduction

Thomas Kuhn popularized the term paradigm in his classic work “The Structure of Scientific Revolutions” [1]. Kuhn defines a paradigm as a worldview that is essentially an interrelated collection of beliefs shared by scientists (for our purposes, health care professionals), i.e., a set of agreements about how problems are to be understood. Kuhn recognized that the way problems are defined, in large part, determines the nature of the strategies designed to solve them. In that work, Kuhn offered several insights into the nature of paradigms. For example, Kuhn noted that:

  • 1.

    The underlying beliefs of the current or dominant paradigm form the epistemological foundation of professional education.

  • 2.

    The beliefs learned during professional education exert a “deep hold” on the student’s mind.

  • 3.

    New paradigms are strongly resisted by the professional community.

  • 4.

    A paradigm shift “resembles a Gestalt shift, a perceptual transformation.”

This essay is based on our insights and experiences over the last 16 years while introducing and promoting the patient empowerment approach to diabetes care. It represents knowledge acquired phenomenologically, rather than empirically, which is consistent with Kuhn’s assertion (#4 above) that paradigm shifts occur as “Ah ha!” moments rather than through logic or empirical study. Our experience is limited to care of diabetes, and we will confine our discussion to that experience, although we believe that the issues and insights presented in this paper apply to a variety of chronic diseases.

During our 20 years on the faculty of medical and nursing schools, we have observed that health care professionals are socialized to a paradigm (Kuhn #1 above) derived from the treatment of acute illnesses [2], [3]. In the acute-care system, patients surrender varying amounts of control to health care professionals in order to gain the expertise, technology, and compassion available from health care professionals. In this acute-care paradigm, health care providers take responsibility for solving their patients’ problems. This feeling of responsibility leaves many health care professionals feeling frustrated when their patients with diabetes do not follow their self-care recommendations.

More than 25 years of behavioral research in diabetes resulting in hundreds of published studies focusing on the “problem of noncompliance/non-adherence” have failed to solve the problem [4]. A cursory Medline search produced over 1450 citations addressing the issue of noncompliance in diabetes, reflecting a continuing search for new knowledge and strategies that will solve the problem of patient noncompliance. Although the issue of patient noncompliance has been addressed frequently, the assumptions embedded in the traditional approach (the acute-care paradigm) have seldom been called into question [5], [6] (Kuhn #3 above). Attempts to address noncompliance assume that:

  • 1.

    noncompliance is a valid and useful construct for understanding the behavior of patients,

  • 2.

    the patient is the source of the problem, and

  • 3.

    the solution to the problem of noncompliance is for patients to defer to the expertise (and authority derived from it) of health care professionals and follow the recommendations they have been given to change their behavior.

Viewing diabetes care and education as an effort to improve compliance, i.e., persuading patients to comply with the recommendations of health care professionals, often fosters conflict and tension [7], [8], [9], [10]. Patients often feel judged and blamed for not following the advice given by health care professionals, even when that advice involves lifestyle changes that are very difficult to implement and sustain [8], [9], [10]. It has become increasingly evident that the acute-care paradigm does not work for the majority of patients with diabetes because its underlying assumptions do not fit the facts of diabetes self-management. Treating diabetes within the acute-care paradigm can make problems worse rather than better because in their efforts to control the patient’s diabetes, many health care professionals are perceived by patients as trying to control their lives [11]. These attempts at control are often felt as criticism and/or an encroachment on the patient’s personal autonomy. For many patients “noncompliance” is an attempt to maintain and reaffirm control over their own lives. Ironically, patients can harm themselves physically in order to protect themselves psychologically [7].

Others and we have advocated the adoption of a new paradigm that is based on the fundamental differences between the treatment of a self-managed chronic illness such as diabetes and the treatment of acute illnesses [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35]. People with diabetes provide the great majority of their health care themselves, much of which is interwoven into the fabric of their daily lives. Diabetes self-management calls for a collaborative approach in which health care professionals and patients evaluate self-management decisions in terms of how well they are helping patients to achieve their own health care goals [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35].

Section snippets

Barriers to the adoption of the empowerment paradigm

We have learned that recognizing the need for a new empowerment paradigm is only the first step on the long journey to its adoption. Below is a description of some of the barriers to the adoption of the empowerment paradigm in diabetes that we have experienced over the course of our work.

Reflective practice

We encourage health care professionals to reflect on their experience with the assumptions underlying the acute-care paradigm when applied to diabetes. Such reflection can create the psychological “space” necessary for the adoption of a new paradigm truly appropriate to the reality of diabetes care. A useful way to actually “see” the existing acute-care paradigm is to employ a psychological “mirror,” i.e., to reflect on care behavior in an attempt to understand our paradigm/philosophy of care

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