Children's and parents' perspectives about activity performance and participation after spinal cord injury: Initial development of a patient-reported outcome measure

OBJECTIVE. To report on a cognitive testing study on newly constructed items designed to evaluate clientreported outcomes of activity performance and participation after spinal cord injury (SCI). METHOD. Thirty-three children with SCI and 13 caregivers participated in cognitive testing interviews. Open-ended questions were used to gain a better understanding of activity performance and participation. The interviews were transcribed verbatim. A thematic analysis was carried out independently by 2 researchers, and key sentences and phrases from both analyses were merged. RESULTS. Four themes were defined: (1) apprehension related to activity performance and participation, (2) reference point, (3) missing out, and (4) autonomy. CONCLUSION. Insight into children's and caregivers' perspectives provided important information that helped refine the wording of test items and response scales. The theme of autonomy provided a stronger catalyst to solidify items for both child- and parent-reported outcomes. This study further validated the complexity of the construct of participation.