ERIC Number: EJ1321301
Record Type: Journal
Publication Date: 2021-Dec
Pages: 16
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1744-6295
EISSN: N/A
Patient-Oriented Research: A Qualitative Study of Research Involvement of Parents of Children with Neurodevelopmental Disabilities
Vanderlee, Emma; Aston, Megan; Turner, Karen; McGrath, Patrick; Lach, Lucyna
Journal of Intellectual Disabilities, v25 n4 p567-582 Dec 2021
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.
Descriptors: Foreign Countries, Neurological Impairments, Developmental Disabilities, Parent Participation, Research, Caregivers, Advisory Committees, Family Involvement, Attitudes, Researchers, Misconceptions, Empowerment, Inclusion
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://bibliotheek.ehb.be:2814
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Canada
Grant or Contract Numbers: N/A