Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review
Creators: name: Gonzalez, Miriam
name: Phoenix, Michelle
name: Saxena, Shikha
name: Cardoso, Roberta
name: Canac-Marquis, Michelle
name: Hales, Lindsay
name: Putterman, Connie
name: Shikako-Thomas, Keiko
Publisher: name: Taylor & Francis
Year: 2020
Subjects: subject: Microbiology
subject: FOS: Biological sciences
subject: Biotechnology
subject: Evolutionary Biology
subject: 69999 Biological Sciences not elsewhere classified
subject: Science Policy
subject: 110309 Infectious Diseases
subject: FOS: Health sciences

description: 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. • 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.