Assessing patterns of participation and enjoyment in children with spinal cord injury.

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.

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). 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.