A qualitative exploration of disability appraisals in pediatric spinal cord injury

Although research suggests that adults with chronic illnesses experience disability in ways that are not fully captured by objective indicators of illness, little is known about subjective aspects of disability among pediatric populations and their parents/caregivers. This qualitative study explored the substance and context of disability appraisals held by youth with chronic spinal cord injury (SCI) and their parents/caregivers.

This study was part of a larger study to develop a patient-reported outcome measure capturing appraisals of disability in youth with chronic SCI and their caregivers. Data were gathered through 60- to 90-min semistructured cognitive pretest interviews with 14 youth-caregiver dyads and one caregiver. Interviews were conducted between April 2022 and June 2024. Youth-caregiver dyads were recruited from an active patient list at a specialty hospital. Data were analyzed using a thematic analysis coding reliability approach, grounded in a critical realism philosophy of science.

Thematic analysis generated six themes of disability appraisals: (a) disability is one part of a person, (b) centering disability to identity, (c) process of adaptation and acceptance, (d) the costs of living with SCI, (e) the collaborative aspect of managing SCI, and (f) accessibility based on the environment, adaptive equipment, and physical body.

Disability appraisals are dynamic and vary. Most themes indicated positive adjustment among youth living with chronic SCI and their caregivers. The diversity of appraisals, however, underscores the need for ongoing assessment as families reappraise the significance of SCI to their lives. (PsycInfo Database Record (c) 2026 APA, all rights reserved).