Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems.
Transition from pediatric to adult healthcare is a well-established challenge for individuals with neurodevelopmental disorders like cerebral palsy. With regard to ethics, some of the key aspects to explore include the following: if and how individuals feel respected during the transition process; if and how their values and preferences are developed and integrated within transition; and if and how young patients are prepared to participate in decision making (to be autonomous) within the transition. We carried out a qualitative study on 14 young adults with cerebral palsy. Some participants reported positive experiences. However, several tension points were identified, including before the transition (eg, transition envisaged with fear and apprehension); during the transition (eg, lack of cooperation or communication between providers in the pediatric and adult healthcare systems); and after the transition (eg, feelings of abandonment). We discuss the clinical influence and ethical significance of better capturing ethical values within the transition process and preparing young individuals to engage in discussions about their health and disease management.
Neuroethics Research Unit, Institut de Recherches Cliniques de Montréal, Montréal, Quebec, Canada.
Danaë
D
Larivière-Bastien
Emily
E
Bell
Annette
A
Majnemer
Michael
M
Shevell
Eric
E
Racine
D000293:Adolescent; D000328:Adult; D002547:Cerebral Palsy / Q000523:psychology*; D003695:Delivery of Health Care / Q000941:ethics*; D005260:Female; D006297:Health Services Accessibility / Q000941:ethics; D006801:Humans; D008297:Male; D010342:Patient Acceptance of Health Care / Q000523:psychology; D017060:Patient Satisfaction; D060305:Transition to Adult Care / Q000941:ethics*