RESUMO
: Introduction: The Young Children's Participation and Environment Measure (YC-PEM) is a tool used to evaluate the frequency, involvement and impact of the environment on participation of children with and without disabilities between zero and five years of age in the home, daycare/preschool and community contexts. Objective: To translate and culturally adapt YC-PEM for use in Brazil. Method: The process consisted of six steps - (1) Translation from English-North American to PortugueseBrazil; (2) Synthesis of translations; (3) Analysis by an expert committee; (4) Cognitive interviews with parents/guardians; (5) Retro translation; (6) Consolidation of the final version. Results: Concomitantly with the translation, adaptations were necessary to facilitate the reading and interpretation of the tool. The title structure and the instructions for users were changed. Some items related to participation and environment were changed and received other examples more related to the Brazilian context. Conclusion: YC-PEM Brazil can help caregivers and healthcare professionals to identify the level of participation of children between zero and five years of age and the need for interventions aimed at improving their participation in the environment
RESUMO
Introdução: A síndrome de Down (SD) é uma condição genética caracterizada pela existência de um cromossomo extra no par cromossômico 21. O nascimento de um bebê com SD representa, na maioria das vezes, um momento traumático para a família. Excluídos os riscos de uma cardiopatia grave, o bebê é indicado à intervenção precoce da fisioterapia. Objetivo: Identificar e mostrar os efeitos que a notícia pode desencadear nas mães do bebê com SD e como isso pode influenciar na demora pela busca do fisioterapeuta, pondo em risco o desenvolvimento neuropsicomotor (DNPM) desta criança. Material e métodos: Estudo de caráter qualitativo e observacional por meio de entrevistas com cinco mães de crianças com SD, usuárias do Serviço de Fisioterapia Infantil da Universidade Federal da Paraíba. Os critérios de inclusão foram ter tido e/ou ter filho(s) com o diagnóstico confirmado de SD. O fator de exclusão está na presença de neuropatias que potencializem os sinais e sintomas convencionais da SD. Resultados: Com relação à reação das mães frente à notícia, pôde-se verificar que todas sofreram um impacto primário ao saberem que o filho não era aquele desejado. As sensações vividas e relatadas por essas mães foram de tristeza, frustração, rejeição/desgraça, medo e choque. Conclusão: As mães entrevistadas experimentaram a perda do filho idealizado e vivenciaram o "luto", no entanto, seus filhos foram encaminhados para a fisioterapia precocemente e receberam acompanhamento profissional para estimulação do quadro neuropsicomotor da criança, o que evidencia um comportamento de superação, saindo do luto à luta. (AU)
Introduction: Down syndrome (DS) is a genetic condition characterized by trisomy of the chromosome 21. The birth of a newborn with DS means, in most cases, a traumatic moment for the family. If severe heart disease is not detected, the infant should be referred to physical therapy sessions early. Objective: To identify and show the effects that the news may trigger on mothers of infants with DS and how this delays the search for physical therapy, which puts at risk the neuropsychomotor development (NPMD) of the child. Material and methods: This was a qualitative and observational study using interviews with five mothers of children with DS, users of the Pediatric Physical Therapy Service at Universidade Federal da Paraíba. The inclusion criteria was to have had and/or to have at least one child with DS diagnosed by karyotype analysis. The exclusion factor was to have neuropathies that maximize the conventional signs and symptoms of DS. Results: With regard to the mothers' reaction upon the news, it was verified that all of them suffered the elementary impact by learning that their child was carrying an unexpected condition. The emotions they experienced and reported were sadness, frustration, rejection/doom, fear and shock. Conclusion: All interviewed mothers experienced "mourning" over the loss of their ideal-wanted child. However, their children were referred early to physical therapy services and had professional support for stimulation of their psychomotor development, which shows an overcoming behavior of mothers by leaving mourning towards fight. (AU)