M. J. Mulcahey, Nicole DiGiovanni, Christina Calhoun, Erica Homko, Ann Riley, Stephen M. Haley; Children’s and Parents’ Perspectives About Activity Performance and Participation After Spinal Cord Injury: Initial Development of a Patient-Reported Outcome Measure. Am J Occup Ther 2010;64(4):605–613. https://doi.org/10.5014/ajot.2010.08148
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© 2020 American Occupational Therapy Association
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.
A lot of times kids don’t pay attention to the boy . . . the kids in wheelchairs. They’re doing their own thing. A couple [kids] have hit his headrest on accident, running into him sideways, and that kind of thing—crowded places are not a good place to go.
[When sitting] in the chair, his head is about to where our hands are and, so when we are walking around, people hit his head with cigarettes that they are holding in their hands, and they do not even know it! That is why we do not go out too much and why I am very nervous when we do decide to go to crowded places like a strip mall or amusement park.
Um, his level [while sitting in the wheelchair], because he is down at people’s butts and hands. Cigarettes because they’ll poke him in the eyeball. They’re right at that level. He is so low that a lot of grown-ups, their eyes seem to be up here and don’t see him down there. He has a lot of problems with bumping into people, and it’s their fault. It’s not him, we try to clear them and they change their movement and he hits ankles; it is not a pleasant or calming experience to go out.
I go to school and I will maybe go out with my friends for a little while, but I will not go places in my friends’ cars in case I need to get home to cath [self-catheterize to empty bladder], and I will not sleep [at my friend’s house], even though they [my friends] want me to. I will not sleep at their house . . . they [my friends] know that I got hurt in the wreck and I cannot walk, but I did not tell them that I cannot go to the bathroom on my own anymore, and they do not know that I need to cath and do a bowel program . . . [silence] . . . I just cannot imagine them knowing I have accidents and sometimes wet myself . . . it is so embarrassing and stressful, I hate myself for that part of it.
We basically made him choose between [flag football] and wheelchair basketball, and he’s going to do basketball instead . . . and I gotta say we probably coached him to go that route . . . because we feel that, um, pretty quick down the road, here, there’s gonna be a separation between what kids are doing and what he’s probably going to be able to do.
They [his friends] have, like two-a-days for football and track and wrestling and basketball, but they don’t have time to come to my house. I really kind of miss that. If I wasn’t hurt, I’d be right there with them.
They told me, you know, even though I’m hurt, I’m still part of the team—but I am not—I do go with them but I am not active with them, I stay at home—maybe I am still a member in their minds.
Yeah . . . I know it is important for him to participate in his own care and exercise, and he is very able to do it [pause], but look at it from my point of view—if everything is going to get done, I just better do it rather than have him participate [pause], there is just too much to do—get him dressed, feed him, get him to school, make sure his medications and cathing supplies are packed [pause], and I have two other kids and then the normal stuff we do, not about the SCI, just stuff we need to do each day . . . participation in his own care is a nice thought and he really can do it without a problem, but I can’t give it the time.
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