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 client-reported outcomes of activity performance and participation after spinal cord injury (SCI).


METHODS
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.


CONCLUSIONS
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.
Mulcahey
M J
MJ
Rehabilitation Services and Clinical Research, Shriners Hospitals for Children, 3551 North Broad Street, Philadelphia, PA 19140, USA. mmulcahey@shrinenet.org
DiGiovanni
Nicole
N
Calhoun
Christina
C
Homko
Erica
E
Riley
Ann
A
Haley
Stephen M
SM
D000203:Activities of Daily Living; D001294:Attitude to Health; D017028:Caregivers; D002648:Child; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents; D026684:Personal Autonomy; D020377:Self Efficacy; D012931:Social Environment; D012934:Social Isolation / Q000523:psychology*; D013119:Spinal Cord Injuries / Q000523:psychology*; D011795:Surveys and Questionnaires