Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review.

Childhood disability engagement hard-to-reach populations health research participation

Journal

Disability and rehabilitation
ISSN: 1464-5165
Titre abrégé: Disabil Rehabil
Pays: England
ID NLM: 9207179

Informations de publication

Date de publication:
09 2021
Historique:
pubmed: 31 1 2020
medline: 6 10 2021
entrez: 31 1 2020
Statut: ppublish

Résumé

We completed a scoping review to: (1) identify strategies that have been used to engage hard-to-reach populations in childhood disability research, and (2) synthesize information as to whether and how these strategies were evaluated. Systematic search of six electronic databases and grey literature to identify articles published in the last 10 years. Studies published in English, French, and Spanish reporting on strategies used to engage hard-to-reach populations in childhood disability research were eligible for inclusion. Out of 106 articles selected for full text review, 16 were included. Engagement was more common in earlier stages of research. The populations included in studies were children with disabilities and their parents. Engagement strategies were reported but rarely evaluated. Anecdotal outcomes of engagement were reported in 14/16 studies and included positive outcomes for the children and parents such as empowerment. The challenges with engagement included the increased time needed to engage children with disabilities or their parents. Our results can guide others who wish to engage a diverse group of children with disabilities and their parents in research. Research on how to engage other hard-to-reach populations within the childhood disability umbrella and evaluation of engagement strategies and outcomes is needed.IMPLICATIONS FOR REHABILITATION• Service providers should be concerned when the research informing their practices does not include families that represent their clients (e.g., families who are low income, Indigenous, ethnic minority, or LGBTQI parents of children with disabilities).• Strategies used to include children with disabilities in research, such as offering varied response methods that include story telling or photography, may also be used to promote participation in clinical services.• Service providers and teachers may have a role in facilitating the recruitment of 'hard-to-reach' families in research and advising researchers on methods to create a comfortable environment with accessible means of data collection for children with disabilities.

Identifiants

pubmed: 31999495
doi: 10.1080/09638288.2020.1717649
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

2815-2827

Subventions

Organisme : CIHR
Pays : Canada

Auteurs

Miriam Gonzalez (M)

Department of Physical and Occupational Therapy, McGill University, Montréal, Canada.
Research Institute of the McGill University Health Centre, McGill University, Montréal, Canada.

Michelle Phoenix (M)

School of Rehabilitation Science and CanChild, McMaster University, Hamilton, Canada.
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada.

Shikha Saxena (S)

Department of Human Kinetics, University of Ottawa, Ottawa, Canada.

Roberta Cardoso (R)

Research Institute of the McGill University Health Centre, McGill University, Montréal, Canada.

Michelle Canac-Marquis (M)

Centre for Innovative Medicine, Research Institute of the McGill University Health Centre, Montréal, Canada.

Lindsay Hales (L)

McConnell Resource Centre, McGill University Health Centre, Montréal, Canada.

Connie Putterman (C)

CHILDBRIGHT Knowledge Translation Committee, CHILD-BRIGHT Network, Montréal, Canada.
Canada-Israel Autism Research Initiative, Toronto, Canada.

Keiko Shikako-Thomas (K)

Department of Physical and Occupational Therapy, McGill University, Montréal, Canada.
Research Institute of the McGill University Health Centre, McGill University, Montréal, Canada.
Canada Research Chair in Childhood Disability: Participation and Knowledge Translation, McGill University, Montréal, Canada.

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