Ableism among children and youth with acquired brain injury and their caregivers: a systematic review

ABSTRACT

Purpose

Children and youth with acquired brain injury (ABI) experience persistent discrimination and ableism. The purpose of this systematic review was to understand the experiences and impact of ableism among children and youth with ABI.

Method

Six international databases were systematically searched for articles from 2002–2022. Studies were screened independently by four researchers who performed the data extraction. Study quality was appraised using the Standard quality assessment criteria for evaluating primary research.

Results

Of the 2085 studies identified in the search, 15 met the inclusion criteria, which involved 1442 children and youth with brain injuries or caregivers representing them. Studies in the review showed the following key trends: (1) incidence of ableism among children and youth with ABI; (2) experiences of ableism at the individual and institutional levels, (3) impact of ableism (i.e., mental health, social relationships, quality of life) and (4) coping strategies (i.e., resources, supports).

Conclusions

Our findings reveal the alarming incidence of ableism among youth with ABI. Therefore, there is a critical need for more research to explore youth’s lived experiences of ableism, especially from their perspectives along with the co-development of solutions to help enhance their social inclusion and well-being.

KEYWORDS:

• Ableism
• brain injury
• children
• discrimination
• youth

Acknowledgments

We wish to acknowledge this land on which the University of Toronto operates. For thousands of years, it has been the traditional land of the Huron-Wendat, the Seneca, and the Mississaugas of the Credit. Today, this place is still the home to many Indigenous people from across Turtle Island and we are grateful to have the opportunity to work on this land. The authors thank the TRAIL lab staff for their support in this project.

Disclosure statement

The authors have no conflicts of interest to report.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/02699052.2023.2184869

Additional information

Funding

This work was supported by the Social Science and Humanities Research Council (SSHRC) and the Kimel Family Fund. through the Holland Bloorview Kids Rehabilitation Hospital both awarded to Sally Lindsay.