Christine Imms

Diversity of participation in children with cerebral palsy

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 Childrens 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.

Children with cerebral palsy participate: A review of the literature

Purpose. To review research that examined the participation in activities of children who have cerebral palsy, in order to understand their extent of participation and the factors that influenced participation. Methods. A comprehensive search of seven databases retrieved 2,111 papers, 40 of which met criteria and were relevant for critique. As this paper intended to examine participation broadly, an ecological framework was used to organise the relevant papers into those studies that considered personal, environmental and occupational factors related to participation. Results. Children with cerebral palsy participated in a diverse array of activities across a range of occupational contexts. Their participation was not always a positive experience. Factors most commonly identified as barriers to participation were social attitudes and the physical environment. This review identified only emergent understandings of the naturally occurring changes in the participation of children with cerebral palsy that come with increasing age and, concurrently, with increasing social and environmental demands. Conclusions. Future research designs must accommodate the complexity of participation to further our knowledge and improve our ability to target therapeutic interventions at community, family and child levels.

Goal-directed training: linking theories of treatment to clinical practice for improved functional activities in daily life

Background: Goal-directed training is an activity-based approach to therapy. Meaningful, client-selected goals are used to provide opportunities for problem solving and to indirectly drive the movements required to successfully meet the task demands. This is in contrast to interventions that focus on changing body functions. Here, the principles of goal-directed training will be studied through two case studies with the aim of linking theories of treatment to clinical practice. Principles illustrated: The approach is based on the dynamic systems motor control theory and occupation-based therapy models, which suggest that movement patterns emerge from the interaction between the persons abilities, environment and the goal. Motor learning principles are applied to structure and schedule practice. Theory in practice: Four components provide the basis for goal-directed training: (1) selection of a meaningful goal; (2) analysis of baseline performance; (3) intervention/ practice regime; and (4) evaluation of outcome. Two individuals with acquired brain injury practised self-care tasks: eating and tying hair into a ponytail. Intensive training was undertaken over four weeks and the intervention outcome measured using the Goal Attainment Scale. Conclusions: The positive achievements in the self-care tasks illustrated that theories of motor control and motor learning can be applied to goal-directed training. The examples demonstrated that the approach could be applied to individuals with a range of abilities.

Characteristics influencing participation of Australian children with cerebral palsy.

Purpose. To investigate the extent to which selected individual, family and environmental variables were associated with participation of children who have cerebral palsy in activities outside school. Methods. Data were gathered through a population-based survey of 114 children born in 1994 or 1995 in Victoria, Australia. Participation was measured using the Childrens Assessment of Participation and Enjoyment. Selected independent variables were classified as related to the child, family or environment. Linear regression analysis was used to identify variables associated with participation in informal (activities that require little planning) and formal (those with structure and leaders) activities. Results. Participation in informal activities tended to be greater in children who preferred informal activities and who had higher manual ability (adjusted R2 = 36.3%). Girls and those with better gross motor function also tended to participate in more activities. The explanatory power of the regression model for participation in formal activities was limited (adjusted R2 = 4.2%). Conclusion. Knowing a childs activity preferences is critical to intervention planning. Being exposed to a range of activities within supportive environments may provide the opportunity to develop preferences, especially in activities where children with cerebral palsy have reduced participation, such as in physical activities.

'Participation': a systematic review of language, definitions, and constructs used in intervention research with children with disabilities.

Improving participation of children with disabilities is a priority; however, the participation construct lacks clarity. This systematic review investigated how researchers defined ‘participation’ and the language used in participation intervention research.

Assessing bimanual performance in young children with hemiplegic cerebral palsy: a systematic review

Aim  This systematic review investigated the availability of assessment tools to evaluate bimanual skills in young children (≤ 3y) with hemiplegic cerebral palsy. Evidence for validity, reliability, and clinical utility of the identified instruments was sought.

Being in pain: a phenomenological study of young people with cerebral palsy

This study explored the experience and impact of chronic pain on the lives of adolescents and young adults with cerebral palsy (CP). Six participants with CP (four males, two females; age range 14‐24y) who were known to experience chronic pain participated in individual in‐depth interviews. Five participants had quadriplegia and used wheelchairs; one had left hemiplegia and walked independently. Pain was located in the hips, back, bladder, and upper limbs. Interviews were analyzed using a six‐step phenomenological process. Participants in the study were found to live with constant pain that was difficult to relieve and pervaded their lives. They often felt isolated and became frustrated due to their loss of independence and inability to participate in activities. Participants indicated the importance of having their experience of pain acknowledged, supporting the need for greater attention to ongoing holistic management. Further research into effective interventions may enable increased activity participation and prevent later chronicity.

Intensive therapy following upper limb botulinum toxin A injection in young children with unilateral cerebral palsy: a randomized trial

Botulinum toxin A (BoNT‐A) combined with occupational therapy is effective in improving upper limb outcomes in children with unilateral cerebral palsy (CP). It is now essential to identify the most effective therapies following BoNT‐A. Given the added burden for children and families, the aim of this study was to explore whether modified constraint‐induced movement therapy (mCIMT) leads to sufficiently superior gains compared with bimanual occupational therapy (BOT) in young children with unilateral CP following BoNT‐A injections.

Repeat botulinum toxin-A injections in the upper limb of children with hemiplegia: a randomized controlled trial

Aim To test the effectiveness of repeat botulinum toxin A (BoNT‐A) injections in the affected arm of 22 children with hemiplegic cerebral palsy (19 males, three females), aged 1 year 10 months to 4 years 10 months (mean 3y 8mo, SD 9mo) in a randomized controlled trial.

Participation of children with intellectual disability compared with typically developing children

We compared participation in out-of-school activities between children with intellectual disability and children with typical development using the Childrens Assessment of Participation and Enjoyment and Preferences for Activities of Children questionnaires. Thirty-eight pairs of children were matched for age (mean age 12.3 ± 2.7 years), sex (17 female, 21 male), location (32 metropolitan, 6 regional) and socioeconomic background (mean SEIFA score 1021 ± 70 and 1024 ± 66). When compared to their typically developing peers, children with intellectual disability participated in fewer Active-Physical and Skill-Based activities and in more Recreational activities. Children with intellectual disability participated less frequently in Skilled-Based activities, had a higher preference for Recreational and Self-Improvement activities, enjoyed Self-Improvement activities more, and participated in a higher proportion of Social activities at home and in a lower proportion of Recreational, Active-Physical, Skill-Based, and Self-Improvement activities alone. These differences may be due to reduced physical, cognitive and social skills in children with intellectual disability, or a lack of supportive environments.