Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies.

Canada North America North Americans collaborative developmental disabilities emancipatory instrument development qualitative research research design research inclusion youth

Journal

Qualitative health research
ISSN: 1049-7323
Titre abrégé: Qual Health Res
Pays: United States
ID NLM: 9202144

Informations de publication

Date de publication:
06 2019
Historique:
pubmed: 20 11 2018
medline: 18 12 2019
entrez: 20 11 2018
Statut: ppublish

Résumé

We discuss strategies to promote the inclusion of people with developmental disabilities (DDs) in qualitative community-based research studies. Strategies were applied in three projects conducted between 2012 and 2017 that addressed issues of socioeconomic challenges, discrimination, and exclusion of children and young adults with developmental disabilities (YADD). Strategies included partnership with community organizations; inclusion of YADD, family caregivers (FCs), and service providers in advisory committees (ACs); and strategies to accommodate YADD. As part of our contribution, we discuss issues of invisibility and exclusion of individuals with DDs who have "low" functioning capacities. There is a need to review studies sampling inclusion criteria as they may constitute a barrier for participation. Preference for sampling "high" functioning individuals may reinforce exclusion in research, and replicate broader patterns of socioeconomic exclusion of individuals with disabilities. Our discussion of inclusive research is informed by critical disability studies and the underlying principle "nothing about us without us."

Identifiants

pubmed: 30451071
doi: 10.1177/1049732318808249
doi:

Types de publication

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

Langues

eng

Pagination

958-971

Auteurs

Luz Maria Vazquez (LM)

1 York University, Toronto, Ontario, Canada.

Nazilla Khanlou (N)

1 York University, Toronto, Ontario, Canada.

Deborah Davidson (D)

1 York University, Toronto, Ontario, Canada.

Fatma Aidarus (F)

1 York University, Toronto, Ontario, Canada.

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Classifications MeSH