Resumen de Children�s and Parents� Perspectives About Activity Performance and Participation After Spinal Cord Injury: Initial Development of a Patient-Reported Outcome Measure

M.J. Mulcahey, Nicole DiGiovanni, Christina Calhoun, Erica Homko, Ann Riley, Stephen M. Haley

• OBJECTIVE. To report on a cognitive testing study on newly constructed items designed to evaluate client-reported 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