Abstract

AIM:

To determine patterns of participation and levels of enjoyment in young people with spinal cord injuries (SCI) and to assess how informal and formal participation varies across child, injury-related, household, and community variables.

METHOD:

One hundred and ninety-four participants (106 males, 88 females; mean age 13y 2mo, SD 3y 8mo, range 6-18y) with SCI and their primary caregivers completed a demographics questionnaire and a standardized measure of participation (the Children's Assessment of Participation and Enjoyment, [CAPE]) at three pediatric SCI centers in a single hospital system in the United States. Their mean age at injury was 7 years 2 months (SD 5y 8mo, range 0-17y); 71% had paraplegia, and 58% had complete injuries.

RESULTS:

Young people participated more often in informal activities (t((174))=29.84, p<0.001) and reported higher enjoyment with these (t((174))=2.01, p=0.046). However, when engaging in formal activities, they participated with a more diverse group (t((174))=-16.26, p<0.001) and further from home (t((174))=-16.08, p<0.001). Aspects of informal participation were related to the child's age, sex, and injury level, and formal participation to the child's age and caregiver education. Caregiver education was more critical to formal participation among young people with tetraplegia than among those with paraplegia (F((4,151))=2.67, p=0.034).

INTERPRETATION:

Points of intervention include providing more participation opportunities for young people with tetraplegia and giving caregivers the resources necessary to enhance their children's formal participation.