Perception of participation after spinal cord injury in youth: comparing self and parent ratings
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PURPOSE: Past research has shown discrepancy between parent and child report of health-related outcomes, leading to questions regarding the use of parents as proxy reporters for their children. It is not known whether similar discrepancies exist between child and parent views of the child’s participation following spinal cord injury. It is also unclear how perception of participation in youth after spinal cord injury compares to self-perception of participation for youth without disabilities. The current study investigated these questions. PROCEDURE: A secondary analysis was completed on data collected from children and youth with a spinal cord injury ages 8-21 years (n=381) and their parents using the Shriner’s Participation Scale. The young person’s self-perception ratings of participation were compared to his/her parent’s perception of their participation, and patterns of self-perception of participation among peers without disabilities . ICC’s were conducted to determine levels of consistency among parent-child dyad responses. Responses from a sample of children and youth without disabilities (n=2005) were compared by t-test to those of the youth with a spinal cord injury determine whether there were differences in how often each group reported they are unable to participate in certain activities. SUMMARY OF FINDINGS: Overall low levels of agreement were found between parent and child perceptions of the child’s participation. The highest agreement (average ICC) between parent and child was found in the 14-17 year old age group. There was a significant difference in self-perception of ability to participate in certain activities between the youth with spinal cord injury and their peers without disabilities.
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