Paediatrics (RCH) - Theses
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ItemSpeech and language abilities of children with cerebral palsy: a population-based study( 2014)Although speech and language development are known to be vulnerable in children with cerebral palsy (CP), little is known about the prevalence and features of impairments in these areas during early childhood. Speech and language are known to influence the activity and participation of children with CP, yet no population-based study has examined the contribution of speech versus language. Activity and participation are recognised as key health outcomes, however, at the time of this research, no tool measuring these functional areas existed specifically for children with CP with communication impairment. This study consisted of three parts: (1) a qualitative study exploring the activity and participation of children with CP to provide the basis of a questionnaire measuring these constructs; (2) development and piloting of the questionnaire; and (3) a population-based study examining the speech and language outcomes of children with CP aged 5 and 6 years at an impairment and activity/participation level. In Part 1, activity and participation were explored by interviewing 13 parents of children with CP. Parents’ responses were thematically analysed to reveal key areas to include in a structured questionnaire of activity and participation. Children’s reported activities and participation were related to: (1) leisure, early learning and educational activities (e.g., reading, classroom activities); (2) communication (e.g., asking questions, expressing needs); (3) independence within the home (e.g., activities of daily living, household chores); and (4) engagement within the community (e.g., shopping, visiting family). Barriers affecting children’s activity and participation included aspects of parents’ own interactions with their child (e.g., not offering choices), unfamiliar people and settings, the negative attitudes of others, and the child’s frustration. Facilitators included the support received from the child’s family and school, being amongst children, having a familiar routine, and the child’s positive disposition (e.g., being determined). These qualitative findings informed the development of an activity and participation questionnaire (Part 2). In Part 2, questionnaire items were devised based on the codes identified during the thematic analysis of the qualitative data. The developed items focused on children’s activity and participation within the home, school and community, and the environmental and personal factors affecting these areas of functioning. Face validity of the questionnaire was determined by verifying that the items adequately described and measured the most relevant aspects of the underlying construct. Content validity was established through expert opinion of the questionnaire’s items. The questionnaire was piloted on seven parents of children with CP and was modified accordingly prior to its use in the population-based study. In Part 3, 84 children with CP born between August 2005 and August 2007 were recruited through the Victorian Cerebral Palsy Register. This represented 37% of the known living population of this age range. Participants were representative of non-participants across key variables (e.g., CP type and distribution, Gross Motor Function Classification level, cognitive status). Children underwent a comprehensive face-to-face assessment. The primary outcome measures were the Diagnostic Evaluation of Articulation and Phonology, the Preschool Language Scale-4, and the developed activity and participation questionnaire. The internal consistency of the questionnaire was examined during this population-based study and was found to be good-to-excellent for items relating to activity and participation. Findings from the population-based study revealed that 80% (66/83) of the sample had some form of speech and/or language difficulty (24%, 20/84, were non-verbal). Speech delay/disorder and language impairment were identified in 66% (40/61) and 62% (51/82) of children, respectively. The subgroups of language impairment identified were isolated receptive (7%, 6/82) or expressive (5%, 4/82), and mixed receptive-expressive (45%, 37/82). Speech delay/disorder consisted of the following subgroups: articulation delay (26%, 16/61), articulation disorder (28%, 17/61), phonological delay (17%, 10/60), consistent phonological disorder (7%, 4/58), and inconsistent phonological disorder (19%, 11/58). Children at most risk for speech delay/disorder and/or language impairment were those with mixed or non-spastic CP motor types, quadriplegia, severe fine motor limitations, epilepsy, hearing, cognitive or vision impairment, and those born with an extremely low birth weight. Non-verbal children and those with language impairment were at the greatest risk for restrictions in activity and participation compared to children with age appropriate speech and language and those with speech delay/disorder in the absence of language impairment. Activity and participation were best facilitated by positive child attributes and the support received from others, whereas barriers included communication partners (e.g., their negative attitudes or not understanding the child) and the difficulty parents experienced in supporting their child. Study findings highlight that the majority of children with CP experience some form of speech and/or language difficulty at 5 and 6 years of age, underscoring the need to routinely assess and monitor these areas. The subtypes of speech delay/disorder and language impairment identified provide suggestions for how to characterise speech and language in children with CP. Findings indicate that activity and participation-based therapy may not be warranted for children with speech delay/disorder who have age appropriate language skills. To confirm this, further research is needed comparing the activity and participation outcomes of this subgroup against typically developing children. The environmental and personal factors that were found to have the strongest impact on children’s activity and participation may provide suggestions for how to optimise activity and participation through intervention. For instance, the effectiveness of reinforcing positive child attributes and counselling parents on early communicative strategies that encourage children to indicate their needs may be trialled in future research to determine their clinical utility in enhancing activity and participation outcomes.