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      Interventions of health education in mothers of children with cerebral palsy Translated title: Intervenções de educação em saú de em mães de crianças com paralisia cerebral

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          Abstract

          INTRODUCTION: The functional performance of children with cerebral palsy is directly influenced by the therapeutic guidelines offered to caregivers. OBJECTIVE: To evaluate the impact of educational health interventions in mothers of children with cerebral palsy about the guidelines of care. METHODS: A qualitative interventional study developed in three stages between April and October of 2015 in the Núcleo de Tratamento e Estimulação Precoce of the Universidade Federal do Ceará, Brazil. The participants were six mothers of children with cerebral palsy. In the first stage we used the technique of individual semi-structured interviews, full recorded and transcribed for the apprehension and exploration of the speeches; In the second stage, taking into account the saturation and categorization of the speeches, a protocol was developed and applied by the researchers divided into eight interventions of health education in the group of mothers then in the third stage the individual interviews were redone for new exploration and comparison of speeches. The analysis of the data of the speeches was made through content analysis according to the proposal of Bardin. RESULTS: Satisfaction reports on receiving care, improvements in the handling of children, greater safety in the implementation of therapeutic guidelines, better perception about the development of the child with the treatment and higher concern with self-care. CONCLUSIONS: The educational interventions promoted a better perception of mothers of children with cerebral palsy about the therapeutic orientations received from the health team, since they are based on the family-centered model offering conditions to the mothers for the confrontation and reduction of the physical overload, emotional and psychological; through self-care in health, and information about means and adaptations for the adequate continuity of child care.

          Translated abstract

          INTRODUÇÃO: O desempenho funcional de crianças portadoras de paralisia cerebral sofre influência direta das orientações terapêuticas oferecidas aos cuidadores. OBJETIVO: Avaliar os efeitos de intervenções educativas em saúde no conhecimento de mães de crianças com paralisia cerebral sobre as orientações recebidas da equipe multiprofissional em relação ao tratamento de seus filhos MÉTODO: Estudo intervencional qualitativo desenvolvido em três etapas entre os meses de abril a outubro de 2015 no Núcleo de Tratamento e Estimulação Precoce da Universidade Federal do Ceará. As participantes foram seis mães de crianças com paralisia cerebral. Na 1ª etapa utilizou-se a técnica de entrevistas individuais semiestruturadas gravadas e transcritas na íntegra para apreensão e exploração dos discursos; na 2º etapa, levando-se em conta a saturação e categorização dos discursos, foi desenvolvido e aplicado pelas pesquisadoras um protocolo dividido em oito intervenções de educação em saúde no grupo de mães e na 3ª etapa as entrevistas individuais foram refeitas para nova exploração e comparação dos discursos. A análise dos dados dos discursos foi feita por meio de análise de conteúdo conforme a proposta de Bardin RESULTADOS: Relatos de satisfação em receber o cuidado, melhoras no manuseio das crianças, maior segurança na execução das orientações terapêuticas, maior percepção sobre o desenvolvimento da criança com o tratamento e maior preocupação com o autocuidado. CONCLUSÃO: As intervenções promoveram uma melhor percepção das mães de crianças com paralisia cerebral acerca das orientações terapêuticas recebidas da equipe de saúde, na medida em que se baseiam no modelo centrado na família oferecendo condições às mães para o o enfrentamento e redução da sobrecarga física, emocional e psicológica; através do autocuidado em saúde, e informações acerca de meios e adaptações para a continuidade adequada da assistência à criança.

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          The 'F-words' in childhood disability: I swear this is how we should think!

          The 21st century is witnessing a sea change in our thinking about 'disability'. Nowhere are these developments more apparent than in the field of childhood disability, where traditional biomedical concepts are being incorporated into--but expanded considerably by--new ways of formulating ideas about children, child development, social-ecological forces in the lives of children with chronic conditions and their families, and 'points of entry' for professionals to be helpful. In this paper, we have tried to package a set of ideas, grounded in the World Health Organization's International Classification of Functioning, Disability and Health (the ICF), into a series of what we have called 'F-words' in child neurodisability--function, family, fitness, fun, friends and future. We hope this will be an appealing way for people to incorporate these concepts into every aspect of clinical service, research and advocacy regarding disabled children and their families.
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            GAME (Goals - Activity - Motor Enrichment): protocol of a single blind randomised controlled trial of motor training, parent education and environmental enrichment for infants at high risk of cerebral palsy

            Background Cerebral palsy is the most common physical disability of childhood and early detection is possible using evidence based assessments. Systematic reviews indicate early intervention trials rarely demonstrate efficacy for improving motor outcomes but environmental enrichment interventions appear promising. This study is built on a previous pilot study and has been designed to assess the effectiveness of a goal - oriented motor training and enrichment intervention programme, “GAME”, on the motor outcomes of infants at very high risk of cerebral palsy (CP) compared with standard community based care. Methods/design A two group, single blind randomised controlled trial (n = 30) will be conducted. Eligible infants are those diagnosed with CP or designated “at high risk of CP” on the basis of the General Movements Assessment and/or abnormal neuroimaging. A physiotherapist and occupational therapist will deliver home-based GAME intervention at least fortnightly until the infant’s first birthday. The intervention aims to optimize motor function and engage parents in developmental activities aimed at enriching the home learning environment. Primary endpoint measures will be taken 16 weeks after intervention commences with the secondary endpoint at 12 months and 24 months corrected age. The primary outcome measure will be the Peabody Developmental Motor Scale second edition. Secondary outcomes measures include the Gross Motor Function Measure, Bayley Scales of Infant and Toddler Development, Affordances in the Home Environment for Motor Development – Infant Scale, and the Canadian Occupational Performance Measure. Parent well-being will be monitored using the Depression Anxiety and Stress Scale. Discussion This paper presents the background, design and intervention protocol of a randomised trial of a goal driven, motor learning approach with customised environmental interventions and parental education for young infants at high risk of cerebral palsy. Trial registration This trial is registered on the Australian New Zealand Clinical Trial register: ACTRN12611000572965.
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              The impact of care on family and health-related quality of life of parents with chronically ill and disabled children.

              Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents' care burden and health.
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                Author and article information

                Contributors
                Role: ND
                Role: ND
                Role: ND
                Role: ND
                Role: ND
                Journal
                rbcdh
                Journal of Human Growth and Development
                J. Hum. Growth Dev.
                Centro de Estudos de Crescimento e Desenvolvimento do Ser Humano (São Paulo, SP, Brazil )
                0104-1282
                2175-3598
                2017
                : 27
                : 2
                : 175-181
                Affiliations
                [01] Fortaleza Ceará orgnameUniversidade Federal do Ceará orgdiv1Núcleo de Tratamento e Estimulação Precoce Brasil
                [04] Fortaleza Ceará orgnameUniversidade Federal do Ceará orgdiv1Departamento de Fisioterapia Brasil
                [02] Fortaleza Ceará orgnameUniversidade Federal do Ceará orgdiv1Departamento de Fisioterapia Brasil
                [05] orgnameNUTEP
                [03] orgnameNUTEP
                Article
                S0104-12822017000200007
                10.7322/jhgd.126857
                ec203c6e-1772-45f7-bb3e-8c893f4fb427

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                History
                : 15 February 2017
                : 10 May 2017
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 25, Pages: 7
                Product

                SciELO Periódicos Eletrônicos em Psicologia


                health education,paralisia cerebral,conhecimento,cuidadores,educação em saúde,cerebral palsy,knowledge,caregivers

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