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

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords:

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

Acknowledgements

We thank the CHILD-BRIGHT Network Citizen Engagement Council and Knowledge Translation Committee members for input and feedback during the review process.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Support for this work is provided through the CHILD-BRIGHT Network, Research Institute of the McGill University Health Centre, and Centre for Interdisciplinary Research in Rehabilitation (CRIR). CHILD-BRIGHT is a strategic patient-oriented research network funded by the Canadian Institutes of Health Research.