Description of the educational process implemented by nurses to people with myotonic dystrophy type 1

Abstract

Introduction: People with myotonic dystrophy (DM1) type 1 have multisystemic impairments. Also, they have much to learn for the self-management of their disease. Still, nurses working with them report that their educational interventions are ineffective. Objective: Describe the educational process implemented by nurses for individuals with DM1 as well as the barriers and facilitators to it. Methods: A [QUAL + quan] formative research was carried out with nurses (n = 3) and individuals with DM1 (n = 30) based on non-participant observations and individual interviews. Results: Nurses performed education interventions as part of an annual follow-up. The objective was primarily to assess the condition of individuals with DM1. The choice of educational strategies used by nurses depends on the characteristics of this population in order to support their empowerment. Several barriers specific to individuals with DM1 (e.g., impairment of executive functions) and to the organization of services (e.g., limited time for educational interventions) in the implementation of the educational process were observed. Educational skills have been a facilitating factor associated with the nurse. Conclusion: For an optimal educational process, it must be structured, planned and adapted to the characteristics of individuals with DM1.