Diversity of participation in children with cerebral palsy

Abstract

The aim of this study was to investigate the participation of children with cerebral palsy (CP) in activities outside school and to compare their participation with a large representative sample of children. A population‐based survey was conducted of children with CP born in Victoria, Australia in 1994 and 1995. Of 219 living children identified, 114 (52.1%) returned completed surveys. The children (65 males, 49 females) were aged between 10 years 9 months and 12 years 9 months (mean age 11y 9mo, SD 6mo). Thirty‐eight per cent had hemiplegia, 23% diplegia, 4% triplegia, 34% quadriplegia, and 1% was of unknown topography. Distribution according to the Gross Motor Function Classification System (GMFCS) was 22.8% Level I, 36% Level II, 10.5% Level III, 8.8% Level IV, and 21.9% Level V. Distribution according to the Manual Ability Classification System (MACS) was: 19.3% Level I, 38.6% Level II, 14.0% Level III, 8.8% Level IV, and 19.3% Level V. Participation was measured using the Children's Assessment of Participation and Enjoyment. Participation in selected sport, cultural, and quiet leisure activities was compared with population‐based data for 11‐year‐olds from the Australian Bureau of Statistics. Children with CP undertook a median of 26.5 activities (interquartile range 10) in 4 months which were commonly informal rather than formal. Intensity of participation was low. Diversity and intensity of participation was similar for children in each level of the MACS and the GMFCS, except for participants in Level V. More children with CP participated in organized sports (p<0.001) compared with other Australian children, although with lower frequency (p<0.001). Participation diversity and level of intensity of Australian children with CP were similar to those reported in a Canadian study.

Fitness, Fun and Friends through Participation in Preferred Physical Activities: Achievable for Children with Disabilities?

“…Bult et al (2010) and Ullenhag et al (2012) examined the validity of the Dutch and Swedish versions of the CAPE and the PAC, respectively, and the results were in line with those from other studies and with recent literature in the field of participation of children with disabilities (Imms, 2008;Majnemer, Shevell, Law, Birnbaum, Chilingaryan, Rosenbaum et al, 2008).…”

“…The CAPE and the PAC have been thoroughly validated for a Canadian population, and the instruments are considered valid and recommendable for both clinical and research purposes (Imms, Reilly, Carlin, & Dodd, 2008;King et al, 2004King et al, , 2007. Bult et al (2010) and Ullenhag et al (2012) examined the validity of the Dutch and Swedish versions of the CAPE and the PAC, respectively, and the results were in line with those from other studies and with recent literature in the field of participation of children with disabilities (Imms, 2008;Majnemer, Shevell, Law, Birnbaum, Chilingaryan, Rosenbaum et al, 2008).…”

“…As did previous studies (Imms, 2008;King et al, 2004, the Norwegian study (Nordtorp, Nyquist, Jahnsen, Moser & Strand, 2013) emphasises that the enjoyment dimension should be used with caution, especially as an outcome measurement. On the basis of the studies conducted by Bult et al (2010), King et al (2004) and Nordtorp et al (2013), it can be concluded that the reliability of the diversity and frequency dimensions is satisfactory.…”

Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives

“…Previous studies suggest that youth with physical disabilities report higher levels of involvement in sedentary activities and have lower rates of community participation than both able-bodied youth and their peers with other disabilities such as vision, hearing and neurological impairments. [6][7][8] Rehabilitation after acquiring an SCI is instrumental yet few studies have qualitatively examined the experience or its impact on future participation. Existing literature has primarily focused on caregiver evaluations of rehabilitation programs for individuals with cerebral palsy and traumatic brain injuries and has found factors such as service quality, functional improvements and information about community services to influence whether caregivers viewed rehabilitation as helpful.…”

Promoting Participation in Leisure Activities: Expanding Role for Pediatric Therapists

“…In particular, there is less participation in social engagements, active recreation, household chores, and community-based programs. Recent studies on children with physical disabilities showed that the children favored participating in informal activities (e.g., watching TV, using computer, listening to music) (Imms, Reilly, Carlin, & Dodd, 2008;Law et al, 2006;Majnemer et al, 2008). Although most participated in at least one formal, organized activity (e.g., art lessons, horseback riding, youth groups, organized sports), frequency of participation was lower for these more structured activities.…”