Étude de l'expérience des malades atteints de sclérose latérale amyotrophique et de leur accompagnement
Year: 2017
Type: dissertation
Abstract: Amyotrophic lateral sclerosis (ALS) is a chronic, progressive, disabling and incurable disease. It evolves in an unpredictable way, in a few months up to 15. This confronts the patients to live in uncertainty and puts the caregivers in difficulties in the accompaniment.The primary aim of this study is to better understand patients’ pathway of care by their experience.The secondary aim of this study is to understand what operates or not for caregivers, in order to identify which ways could improve the quality of care.This is a qualitative study using an interactionist sociological approach. 6 semi-directional interviews with patients were conducted over 2 months as well as the collection and analysis of the stories told by a blogger with ALS.The analysis of the data first let us understand the different processes that lead patients to deal with the disease, despite the upsets it causes in all the spheres of their social life and their identity. Then, xe highlighted what could further improve the quality of their accompaniment.This nursing research provides an insight into the role of clinical nursing specialists in palliative care and chronic disease from a clinical, pedagogical and relational point of view and opens up alternative perspectives of research on ALS.
Source: HAL
Author: Saillard, Lucille
Institution: Université de Versailles Saint-Quentin-en-Yvelines
Language: French
Topic: Nursing care and research
Subfield: Research and Theory
Field: Nursing
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7028457222