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L’information : la clé de la relation parents–enfants–professionnels dans la paralysie cérébrale ?

Abstract : Introduction The objective of this research was to assess the needs, sources and perception of information content of children with cerebral palsy aged 0 to 18 and their parents. Methodology A questionnaire was distributed online to families of children with cerebral palsy in metropolitan France and DOM-TOM. Descriptive statistics and a qualitative analysis of open-ended questions were used . Results In total, 111 family questionnaires were analyzed (62.2% boys, 43.2% aged 6–12 years, 52.3% unilateral cerebral palsy). The need for information on cerebral palsy was reported as a strong need for 64% of parents. The three sources of information most used by parents were Internet, health professionals, and social networks. “Rehabilitation” was the information topic most requested by parents and “learning to live with cerebral palsy” the one by the children. Health professionals were the source of information that combined the greatest use and reliability for parents. The media the most requested by the children was a video. Discussion This survey suggests a need for an improvement in family-professional communication. The development of therapeutic education, digital resources dedicated to cerebral palsy, training of professionals but also the promotion of peer helpers and patient partners are ways to consider, distinguishing two targets: parents and children.
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Submitted on : Friday, June 24, 2022 - 1:10:04 PM
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A. Laouanan, L. Houx, E. Fily, S. Le Moal, S. Brochard. L’information : la clé de la relation parents–enfants–professionnels dans la paralysie cérébrale ?. Motricité Cérébrale, Elsevier Masson, 2021, 42 (2), pp.30-36. ⟨10.1016/j.motcer.2021.04.002⟩. ⟨hal-03703839⟩



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