Patient-oriented research: A qualitative study of research involvement of parents of children with neurodevelopmental disabilities.
J Intellect Disabil
; 25(4): 567-582, 2021 Dec.
Article
em En
| MEDLINE
| ID: mdl-32729369
ABSTRACT
Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. This was the goal of the Strongest Families Institute Neurodevelopmental research, in Halifax, Nova Scotia, when they included a parent advisory committee, made up of parents and caregivers of children and adolescents with a neurodevelopmental condition, to complete their research project. The purpose of this qualitative research was to examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee for the Strongest Families Neurodevelopment research project. From interviews with both parents/caregivers and researchers that played a role on the advisory committee, four major themes emerged on how to negotiate and navigate their time on the committee and what worked well and what did not. This led to recommendations for future researchers and patients who may create or be a part of an advisory committee.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Deficiência Intelectual
Tipo de estudo:
Qualitative_research
Limite:
Adolescent
/
Child
/
Humans
Idioma:
En
Revista:
J Intellect Disabil
Assunto da revista:
TRANSTORNOS MENTAIS
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Canadá