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Parent experience of implementing effective home programs
1Cerebral Palsy Institute, Darlinghurst, Sydney, Australia. inovak@tscnsw.org.au
Abstract:
The aim of this preliminary study was to describe parent views about implementing effective home programs to inform practice recommendations. Semi-structured interviews were conducted with 10 parents of children with cerebral palsy (2 fathers and 8 mothers) who had participated in a home program by using a partnership-based approach. Transcripts were analyzed using grounded theory to the level of open coding of categories. Parents believed practice of home program activities was a part of life, to maximize progress, gain guidance, and manage time. Partnership-based home programs provided benefits including support, realism, flexibility, motivation, generalisable activities, practice reminders, progress updates, and role clarification. Parents advised other parents to accept their child's disability, never refuse help, be honest, develop routines, and consider programs essential. Parents advised professionals that parents want support, interdisciplinary coordination, and prognostic information, without pressure to comply. The findings suggest that parents experienced benefits using partnership home programs. Parents used these programs to help parent their child. Provision of ongoing support to parents was vital for motivation.
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