Presentation LDES Nurse Formation, 2001
Appearances in therapeutic education are often misleading and obstacles often exist in the minds… of patients, but also in those of careers! During the past twenty years, patient education has been established and has enjoyed some success. It has enabled the dissemination of health behavior information linked to specific illnesses, treatments, or the prevention of complications or relapses. Patients with chronic illnesses are given quasi-complete information on the development of their pathology, on the main symptoms to recognize, on possible actions or medications to take, treatment relevance, etc. For example, this allows asthmatic children to distinguish between crisis management and long-term treatment. Patient education has also investigated the ways in which an illness can impact other aspects of life. Meetings between careers, patients, educators and self-help groups have enabled interesting steps forward, in particular to improve the collaboration between patients, families and professional staff. The family of a patient suffering from diabetes is more aware of medication tolerance levels and reassured about harmlessness, illness duration, origins and evolution.
Centers and schools are gradually being built in many countries. Following the example set in Switzerland, France, Italy, Belgium, Germany, Canada... and the experience of diabetes experts, therapeutic education is of interest to more and more health professionals, both within hospitals and outside. Now patient education is taught to new professionals, and taken into account by international organizations. The World Health Organization (WHO) has thus defined important points:
1. We must train patients to acquire enough know-how to balance their lives and optimally control their illness.
2. Therapeutic education is an ongoing process, and an integral part of healthcare provisions.
3. Patient education includes awareness, information, learning and psychosocial support, all linked to the illness and its treatment.
Despite this initial success and recognition, much remains to be done… since patient education often relies on medical and didactical premises, which are taken for granted! Thus, therapeutic education, like medicine more generally, continues to follow some «false leads » by the way it first addresses illnesses, organs, physiology… and not patients. First and foremost, it tries to improve sugar levels, arterial tension, insulin doses, etc…
In the case of chronic illnesses, education tends to enable patients to « acquire and maintain sufficient resources to manage life with the illness in the best way possible». However, it always revolves around « teaching necessary actions »… In fact, all information is coming from the professional staff who know, say (possibly explain) and act according to their specialist's logic and criteria (mortality, morbidity, etc.). Thus, it does not create the necessary dynamic for patients to take charge of their illness. Worse, frequently patients may feel dispossessed or inhibited because of receiving such « orders »... In this case, aren't patients simply waiting for prescriptions?
Our hypothesis, refined and tested in many teaching situations, is different (1). It is not instantaneous, and is part of an alternative approach of patients, of illnesses and of the patient-carer relationship, which is interactive, systemic and paradoxical (Giordan et de Vecchi 1987, Giordan 1998). We believe in the efficiency of an approach, which does not come from professionals but from « within » each patient. It requires patients to change their outlook on their illness, and radically reconsider their relationship with their illness, even with themselves… Learning facts and competences is necessary and effective in the short term, but not sufficient to allow patients to change their behavior and (re)discover a healthy dynamic.
Therapeutic education should allow patients to know themselves better, as a (sick) person. In particular, shouldn't patients become aware of all the processes, which are between him or herself and the « event » thought to be threatening? This would help manage, tolerate or diminish its impact on physical and psychological health.
Next, the patient must develop and mobilize skills and personal resources to live life as well as possible with an illness and its treatment. While patients often expect an outside « miracle », especially from the doctor, this implies an evolution of his or her attitude towards treatments and careers. In the case of chronic illnesses, patients themselves must construct a new life balance with the illness, taking it into consideration.
Starting from within the patient does not mean that care professionals no longer have a role, including a teaching one. On the contrary, the care team still plays a key role. However it is far from obvious; and potential activities for patients are not limited to a list of pre-defined courses. Instead, with each unique patient, a «teaching environment » must be considered which both builds upon and challenges each patient's identity.
- Giordan, A. A new approach for patient education: beyond constructivism in Patient Education and Counseling 38, 1999
- Giordan, A. Communication thérapeutique: l'impact d'un message dans le processus d'apprendre (pdf) in Psychothérapies vol. 16, 1996
- Assal, JP. New developments in diabetes education (pdf) in the DESG teaching letter
(1) Qualitative approach: field observations (division enseignement thérapeutique, 1999—2004) and didactic modeling, in particular based on the allosteric learning model (Giordan 1997 ; Giordan, 2002).