Date Presented 04/13/21
The purpose of this qualitative systematic review was to understand the current level of inclusion and participation of children with disabilities in health research. Overall, children with disabilities were not active participants in health research across fields. This is a call to OT scholars, because they have the responsibility to develop inclusive research that enables children with disabilities to participate in research.
Primary Author and Speaker: Janet Njelesani
Additional Authors and Speakers: Angel Yen, Catharine Kim, Mathieu Woo, and Arren Bruland
INTRODUCTION: Children with disabilities can participate in research and offer unique insights into their worlds (Tardi & Njelesani, 2015). However, within health research, the extent of children with disabilities participation is not known. Such engagement, especially through qualitative approaches, is seen as crucial for understanding context and engaging local knowledge and experience prior to and during the implementation of health interventions, and also for interpreting the outcomes and consequences that interventions have.
DESIGN: A qualitative systematic review was conducted to identify and critically examine the participation of children with disabilities in health research (Barnett-Page & Thomas, 2009). The review questions included; ‘How are children with disabilities participating in health research?', ‘How is research being adapted to promote inclusion and participation?', and ‘What are the reported rationale for, benefits of, and barriers to participation of children with disabilities?'
METHODS: With the aid of a medical university librarian, a database search was conducted using a combination of the following keywords: children; health; and qualitative research for health research articles. We also hand-searched key journals (e.g., Qualitative Health Research, Disability and Rehabilitation, Disability and Society) to identify studies not included within the database search. Inclusion criteria included published qualitative health studies that included children with disabilities as participants, written in English, and published since January 2007. Two independent reviewers determined whether studies met the inclusion criteria. The Critical Appraisal Skills Program (CASP) reporting checklist was used to appraise the studies (Nadelson & Nadelson, 2014). Data from each of the included articles were extracted into an MS Excel spreadsheet. All authors extracted data and 50% of the articles were double extracted with controversy and ambiguities resolved during team meetings.
RESULTS: The search resulted in a total of 14,799 articles, with 61 qualitative studies meeting the inclusion criteria. The health studies primarily included children with physical impairments (e.g., cerebral palsy) and Autism. The majority addressed ethical issues in doing research with populations considered to be more vulnerable but did not examine their own reflexivity and how their positions of power influenced the work. Furthermore, most studies did not include details on measures taken to ensure accessibility (e.g., interview materials in alternate formats) to include a wider range of impairments (e.g., children with various communication needs). Barriers to greater participation of children with disabilities in health research commonly cited included transportation, parent approval, and excluding children with impairments believed to hinder communication with the researcher (e.g., children with intellectual impairments). Overall, researchers were conducting research ‘on' children with disabilities (rather than ‘with' children) as children were not provided the opportunity to actively participate and express their views.
CONCLUSION: The review indicates that researchers are not sufficiently considering issues of accessibility, power disparities, and participation of children with disabilities in the design and implementation of research. These gaps diminish the impact of children with disabilities contributions to research.
IMPACT STATEMENT: Findings of the review are relevant to occupational therapy scholars because all scholars have the responsibility to develop inclusive research that enables children with disabilities to be active participants in research that concerns their everyday lives.
References
Barnett-Page, E., & Thomas, J. (2009). Methods for the synthesis of qualitative research: A critical review. BMC Medical Research Methodology, 9(1), 1-11. https://doi.org/10.1186/1471- 2288-9-59
Nadelson, S., & Nadelson, L. S. (2014). Evidence-based practice article reviews using CASP tools: a method for teaching EBP. Worldviews on Evidence-Based Nursing, 11(5), 344-346.
Tardi, R., & Njelesani, J. (2015). Disability and the post-2015 development agenda. Disability and Rehabilitation, 37(16), 1496-1500. https://doi.org/10.3109/09638288.2014.972589
