JCPSLP Vol 14 No 2 2012

Research update

Activities and participation of children with cerebral palsy Cristina Mei

R esearch investigating the speech and language abilities of children with cerebral palsy (CP) has to date largely focused on the impairment level. Yet emerging data highlight the functional impacts of communi­ cation deficits (Fauconnier et al., 2009; Hammal, Jarvis, & Colver, 2004; Morris, Kurinczuk, Fitzpatrick, & Rosenbaum, 2006). In light of this, researchers at the Murdoch Childrens Research Institute have recently commenced a study investigating the speech and language abilities of children with CP aged 5 and 6 years at both an impairment and functional level consistent with the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY; World Health Organization, 2007). At the impairment level of the ICF-CY, children with CP may demonstrate a range of deficits relevant to speech pathologists that involve oral motor, speech, and/or language functions. Known functional impacts of communication disorders in children with CP at an activities and participation level include reduced number of social contacts and limited participation in community activities (Raghavendra, Virgo, Olsson, Connell, & Lane, 2011). To measure children’s activities and participation, the research team developed a questionnaire based on qualitative data. This qualitative study involved individually interviewing 13 parents of children with CP aged between 4 and 9 years. The interviews aimed to firstly determine parental opinions regarding their child’s activities and participation and to secondly identify specific barriers and facilitators impacting on children’s functioning. Interview questions were developed with reference to the ICF-CY. Parents’ responses were then analysed to inform the development of questionnaire items, such as “my child is able to make choices or decisions” and “my child communicates to share information”. Results from the qualitative study indicated that children reportedly participated in a range of activities including communication-related activities (e.g., making choices), self-care tasks (e.g., eating), leisure activities (e.g., reading), assisting in household tasks (e.g., cleaning), school activities (e.g., group activities), and community-related activities (e.g., shopping). In terms of factors impacting on children’s activities and participation, parents reported the following facilitators: the child’s characteristics (e.g., being determined or social), the support provided by others (e.g., family members, the school), the positive characteristics of communication partners (e.g., going to the child’s level, understanding how to use the child’s communication device), the child’s environment (e.g., familiar setting, being around other children), and speech pathology services (e.g., receiving regular therapy and access to communication aids). In contrast, reported barriers included the child’s characteristics (e.g., being shy, behavioural issues), children’s physical, communication, and feeding impairments, and the parent themselves (e.g., not providing the child with choices or opportunities to communicate). Further barriers experienced by children included the negative attitudes of others or others not understanding the child, the child’s environment (e.g., noisy and crowded

areas), and speech pathology services (e.g., lack of services, complexity of communication devices). The developed questionnaire that is based on the above qualitative findings is currently being administered to a population-based sample of children with CP, as part of the author’s PhD research. It is anticipated that this questionnaire will highlight differences between the activities and participation of children with CP with and without associated speech and language impairments. Furthermore, the data obtained via the questionnaire will assist in identifying key barriers and facilitators specific to children with CP with associated communication impairments. Given the present lack of assessments measuring the activities, participation, and influencing contextual factors of children with communication impairments, this information could be used by speech pathologists to assist in the assessment and management of children with CP. Acknowledgements Thanks are extended to the author’s PhD supervisors, Dr Angela Morgan, Prof Sheena Reilly, Prof Dinah Reddihough, and Dr Fiona Mensah, for their contribution. This study is funded by an NHMRC postgraduate scholarship (#607448) and a Nadia Verrall Memorial Research Grant from Speech Pathology Australia. The study is further supported by the Victorian government’s Operational Infrastructure Support Program. References Fauconnier, J., Dickinson, H. O., Beckung, E., Marcelli, M., McManus, V., Michelsen, S. I., … Colver, A. (2009). Participation in life situations of 8–12 year old children with cerebral palsy: Cross sectional European study. British Medical Journal , 338 , b1458. Hammal, D., Jarvis, S. N., & Colver, A. F. (2004). Participation of children with cerebral palsy is influenced by where they live. Developmental Medicine & Child Neurology , 46 (5), 292–298. Morris, C., Kurinczuk, J. J., Fitzpatrick, R., & Rosenbaum, P. L. (2006). Do the abilities of children with cerebral palsy explain their activities and participation? Developmental Medicine & Child Neurology , 48 (12), 954–961. Raghavendra, P., Virgo, R., Olsson, C., Connell, T., & Lane, A. E. (2011). Activity participation of children with complex communication needs, physical disabilities and typically-developing peers. Developmental Neurorehabilitation , 14 (3), 145–155. World Health Organization. (2007). International Classification of Functioning, Disability and Health – Children and Youth Version . Geneva: Author.

Cristina Mei

Correspondence to: Cristina Mei PhD Scholar

Murdoch Childrens Research Institute 50 Flemington Road, Parkville, 3052 phone: +61 (0)3 9345 5521

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JCPSLP Volume 14, Number 2 2012

www.speechpathologyaustralia.org.au