A difficult transition from childhood to adult healthcare: the case of epilepsy

The purpose of this study was to analyze modalities of the transition from pediatric to adult epilepsy care and patients' acquisition of autonomy. This study was conducted using semidirected interviews composed of three major parts: the patient's criteria of transition toward adult healthc...

Full description

Saved in:
Bibliographic Details
Published in:Archives de pédiatrie : organe officiel de la Société française de pédiatrie 2015-04, Vol.22 (4), p.337-342
Main Authors: Affdal, A-O, Moutard, M-L, Billette de Villemeur, T, Duchange, N, Hervé, C, Moutel, G
Format: Article
Language:fre
Subjects:
Adolescent
Epilepsy - therapy
Humans
Pediatrics
Personal Autonomy
Practice Patterns, Physicians
Transition to Adult Care
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:The purpose of this study was to analyze modalities of the transition from pediatric to adult epilepsy care and patients' acquisition of autonomy. This study was conducted using semidirected interviews composed of three major parts: the patient's criteria of transition toward adult healthcare (factors taken into account, anticipation, the patient's opinion, etc.), conditions (teamwork with the neurologists, transmission of the medical record, continuity of health care, etc.), and the role played by social workers and psychologists. We interviewed 10 doctors belonging to six major Parisian hospital units involved in the monitoring of children and adolescents with epilepsy and working in Pediatric Neurology Departments of the Île-de-France region. For most of the doctors, reaching 18 years of age was the major argument taken into account to consider transition to adult care. According to the doctors interviewed, parents are generally worried when their child has to find another doctor (7/10). According to eight out of 10 doctors, the neurologist is selected to take over. The doctors recognize the importance of psychologists and social workers even if they are not always included. The process by which the patient gains autonomy depends a great deal on the role played by the pediatricians and parents, although some parents are very protective. This behavior weakens the patient's capacity for autonomy and it varies according to the degree of his or her physical and/or neurological disabilities. Furthermore, developing autonomy requires interdisciplinary work that is not yet fully in place. The lack of structures well-adapted to the uniqueness of each patient and the lack of coordination between the various institutions do not favor the acquisition of autonomy. A network that could efficiently respond to the needs of epileptic patients as well as medical care tailored to adolescents would be the answer to this dilemma.
ISSN:1769-664X
DOI:10.1016/j.arcped.2015.01.014