Access to assistive technology in pediatric brain injury care: Narrative perspectives of clinicians, vendors, and parents.

Abstract

Background: The critical need for assistive technology (AT) for children with brain injury is recognized. Despite its importance, there is scant literature on how delays and denials in the provision of AT affect recovery and rehabilitation.

Objective: To examine the complex ecosystem of AT usage and barriers to access, drawing upon the perspectives of clinicians, vendors, and parents in an exploratory qualitative study.

Design: This is a companion study to a quantitative retrospective medical chart review using grounded theory methods. Two focus groups with clinical staff, one focus group with vendors, and six interviews with parents of children with brain injury were conducted. The narrative data were combined to maximize the triangulation of themes.

Setting: Pediatric rehabilitation hospital.

Participants: Multidisciplinary rehabilitation clinicians, vendors who provide AT, and parents of children with brain injury.

Results: Primary themes included coordinating with insurance, vendors, and funding; fostering age-appropriate independence; family's familiarity with AT; understanding the dynamic nature of development and recovery; impact on family relationships; costs/financial considerations; accepting role of AT; discovering new AT; accepting child's reality; and advocating for AT access.

Conclusion: The ethical implications of delays in access to AT, particularly in children with maturing and recovering brains, are far reaching and bring to the forefront concerns about the potential impact of disability stigma, social justice, and access to devices and information and the importance of maximizing self-determination and enabling independence and autonomy. Delays in access to AT preclude both a child's rights and capabilities, adversely affecting their recovery and maturation and limiting their integration into society under disability law.