title: Perspectives of adolescents and young adults with cerebral palsy on the ethical and social challenges encountered in healthcare services.
abstract: Healthcare is a context where individuals with disability confront important ethical and social challenges. Adolescents and young adults with cerebral palsy (CP) seem to face additional challenges but we have little insight into their perspectives. This qualitative study aimed to identify and better understand such challenges. We interviewed 14 participants with CP aged 18 to 25. Participants described a range of challenges experienced when using health services, including: lack of long-term follow-up, shortcomings in physical access to infrastructures, and situations of injustice. Challenges specific to medical consultations were reported (e.g., rude attitudes, belittlement, inadequate communication, lack of consideration). We discuss and explain further that: (1) the ethical principle of respect for persons needs to be concretely specified to improve current practices; (2) respect for autonomy calls for further direct empowerment of individuals with CP and, (3) gaps in dedicated healthcare resources for CP and the long-term needs associated should be addressed.
authors.forename: Danaë
authors.initials: D
authors.lastname: Larivière-Bastien
authors.forename: Annette
authors.initials: A
authors.lastname: Majnemer
authors.forename: Michael
authors.initials: M
authors.lastname: Shevell
authors.forename: Eric
authors.initials: E
authors.lastname: Racine
mesh_terms: D000293:Adolescent; D000328:Adult; D002547:Cerebral Palsy / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D015331:Cohort Studies; D003695:Delivery of Health Care / Q000941:ethics* / Q000379:methods; D004185:Disability Evaluation; D006233:Persons with Disabilities / Q000534:rehabilitation*; D005260:Female; D006297:Health Services Accessibility / Q000941:ethics*; D006801:Humans; D008297:Male; D020380:Needs Assessment; D036301:Qualitative Research; D011787:Quality of Health Care / Q000941:ethics*; D012720:Severity of Illness Index; D012917:Social Adjustment; D011795:Surveys and Questionnaires; D055815:Young Adult