<p>Syftet med studien var att undersöka livskvaliteten hos barn och ungdomar med cerebral pares. 56 barn och ungdomar med cerebral pares i åldern 10-18 år med Gross Motor Function Classification system (GMFCS) tillhörighet I-III, som gick i grundskola, grundsärskola eller gymnasieskola och som erbjöds insatser från Skånes 11 olika barn- och ungdomshabiliteringar har undersökts via en enkät: Child Health Questionnaire (CHQ-87).</p><p>CHQ-87 är ett självskattningsformulär bestående av 87 frågor, indelade i två huvudområden som tillsammans täcker individens fysiska och psykosociala hälsa. Enkäten skickades ut per brev under våren 2008. Totalt skickade 167 enkäter ut och 56 enkäter inkom besvarade.</p><p>Resultatet visar ingen signifikant skillnad mellan den fysiska och den psykosociala hälsan. Skolsituationen och kamratrelationer upplevs positivt av flertalet som svarade och merparten svarar att de har det bra i sina familjer. De upplever att de har en god hälsa och att de inte oroar sig mera över sin hälsa än andra barn. Flera barn och ungdomar besväras av värk både ofta och mycket. Känslolivet upplevs stabilt, självkänslan är god och många upplever att de är glada och tillfreds med sig själva och sin kropp.</p> / <p>The aim of this study was to examine the quality of life in children and adolescents with cerebral palsy. 56 children and adolescents, diagnosed with cerebral palsy, ages 10-18, Gross Motor Function Classification System (GMFCS) level I-III, attending primary or secondary school in Sweden have been asked about their quality of life using a questionnaire, Child Health Questionnaire (CHQ-87). All children and adolescents have attended the 11 child habilitation centers in Skåne.</p><p>The CHQ-87 is self reported, and consists of two main domains of questioning, covering both the physical and psychological health of the individual.  A total of 167 questionnaires were sent out and 56 were returned and answered.</p><p>The results show no significant difference between the physical and psychological health.    The situation in school and having friends was highly ranked by most of the children and adolescents and many of them respond that they lead a good life within their families. They express that they are in good health and that they worry no more about their health than others. Many experience frequent and intense pain. They express a stable emotional life, good self esteem, happiness, and that they are satisfied with themselves and their own body.</p>

Syftet med studien var att undersöka livskvaliteten hos barn och ungdomar med cerebral pares. 56 barn och ungdomar med cerebral pares i åldern 10-18 år med Gross Motor Function Classification system (GMFCS) tillhörighet I-III, som gick i grundskola, grundsärskola eller gymnasieskola och som erbjöds insatser från Skånes 11 olika barn- och ungdomshabiliteringar har undersökts via en enkät: Child Health Questionnaire (CHQ-87). CHQ-87 är ett självskattningsformulär bestående av 87 frågor, indelade i två huvudområden som tillsammans täcker individens fysiska och psykosociala hälsa. Enkäten skickades ut per brev under våren 2008. Totalt skickade 167 enkäter ut och 56 enkäter inkom besvarade. Resultatet visar ingen signifikant skillnad mellan den fysiska och den psykosociala hälsan. Skolsituationen och kamratrelationer upplevs positivt av flertalet som svarade och merparten svarar att de har det bra i sina familjer. De upplever att de har en god hälsa och att de inte oroar sig mera över sin hälsa än andra barn. Flera barn och ungdomar besväras av värk både ofta och mycket. Känslolivet upplevs stabilt, självkänslan är god och många upplever att de är glada och tillfreds med sig själva och sin kropp. / The aim of this study was to examine the quality of life in children and adolescents with cerebral palsy. 56 children and adolescents, diagnosed with cerebral palsy, ages 10-18, Gross Motor Function Classification System (GMFCS) level I-III, attending primary or secondary school in Sweden have been asked about their quality of life using a questionnaire, Child Health Questionnaire (CHQ-87). All children and adolescents have attended the 11 child habilitation centers in Skåne. The CHQ-87 is self reported, and consists of two main domains of questioning, covering both the physical and psychological health of the individual.  A total of 167 questionnaires were sent out and 56 were returned and answered. The results show no significant difference between the physical and psychological health.    The situation in school and having friends was highly ranked by most of the children and adolescents and many of them respond that they lead a good life within their families. They express that they are in good health and that they worry no more about their health than others. Many experience frequent and intense pain. They express a stable emotional life, good self esteem, happiness, and that they are satisfied with themselves and their own body.

Made available in DSpace on 2016-06-02T19:46:07Z (GMT). No. of bitstreams: 1 2341.pdf: 2590831 bytes, checksum: b5f5f5f6e27e928df1d8fc6612f087a4 (MD5) Previous issue date: 2009-02-27 / Studies have demonstrated that providing instruction for and intervening in the family of children with special needs during their treatment process may represent an effective way of ensuring adequate parental support. Moreover, since each phase of the development of a child with special needs may create novel demands, the professionals have shown to be required to review their actions throughout the treatment. The current study aimed to identify the major demands from mothers of children with severe cerebral palsy as regards the instructions provided by the professionals involved in their child s treatment as well as other sources of support for child care and development. Three important milestones in child development were taken into account: (a) preschool period; (b) early school period; and (c) early adolescence. Firstly, the Gross Motor Function Classification System (GMFCS) for Cerebral Palsy was translated and cross-cultural adapted to be used by Brazilian professionals. Accordingly, it was translated to Portuguese and its content was analyzed. Back-translation was conducted to ensure equivalence. The participants were nine mothers of children with cerebral palsy, who were divided into three groups according to their child s ages. Semistructured interview was used to collect data on child care, treatment, accessibility, types and levels of support, questions, difficulties, expectations, and parent-professional relationship. The Collective Subject Discourse was the method used to analyze the interviews. The results were presented according to the demands for each of the phases, being later discussed by comparing groups. The results of this study demonstrate that difficulties, questions and concerns about child care varied according to the child s developmental phase. In the initial phases, the major demands were related to questions about the child s survival, the lack of knowledge about proper child care, difficulties with the child s general health and the insecurity about the characteristics of the disorder. After meeting these demands, the mothers started to create expectations and raise queries about the child s development and prognosis, suggesting that they started to worry about the acquisition of walking, language and independence. Concern over child s weight, length and sexuality and the emergence of deformities are raised as important demands in the period close to adolescence. This study intends to contribute towards both an improvement of knowledge in the area and a better understanding of these family needs by providing reflection tools and suggesting intervention practices with this population. / A literatura aponta a importância das orientações e intervenções familiares durante o processo de tratamento de crianças com necessidades especiais, visto que essas são formas eficazes de fornecer esclarecimentos necessários e suporte adequado aos pais dessas crianças. Observa-se que a cada fase do desenvolvimento do indivíduo com necessidades especiais devem surgir novas demandas de orientações, levando os profissionais a reverem suas ações ao longo de todo o tratamento. O presente trabalho tem por objetivo identificar as principais demandas de mães de crianças com diagnóstico de paralisia cerebral grave em relação às orientações recebidas pelos profissionais envolvidos no tratamento, em relação à participação da criança e sua família na comunidade e com relação às outras fontes de apoio recebidas para o cuidado e desenvolvimento da criança em três diferentes marcos do desenvolvimento infantil: (a) período pré-escolar, (b) período escolar, (c) pré-adolescência. Para a realização da proposta, dois estudos foram desenvolvidos. O Estudo 1 teve por objetivo realizar a adaptação transcultural do Sistema de Classificação da Função Motora Grossa para a Paralisia Cerebral, o GMFCS. Neste estudo foi realizada a tradução, a análise semântica, a análise de conteúdo e a retro tradução do instrumento. A adaptação transcultural do instrumento é exposta na íntegra neste trabalho. O Estudo 2 contemplou o objetivo principal desta pesquisa que envolveu a identificação das demandas das mães de crianças com paralisia cerebral. Participaram do Estudo 2 nove mães de crianças com paralisia cerebral que formaram três grupos de acordo com faixas etárias em que seus filhos se encontravam. As mães foram entrevistadas por meio de um roteiro de entrevista semi-estruturada que abordou questões relativas ao cuidado com a criança, ao tratamento, à acessibilidade, aos tipos e níveis de ajuda, dúvidas e dificuldades, relação com profissionais, suas expectativas, dentre outros. A análise das entrevistas foi realizada por meio da técnica do Discurso do Sujeito Coletivo. Os resultados foram apresentados enfocando as principais demandas identificadas em cada uma das fases e discutidos de forma comparativa entre os grupos. Pelo presente estudo foi possível observar que, conforme a fase do desenvolvimento infantil, as mães apresentam diferentes dificuldades, dúvidas e preocupações com os cuidados da criança. Observa-se que, nas fases iniciais, as principais demandas estão relacionadas às dúvidas quanto à sobrevivência da criança, ao desconhecimento das melhores formas de cuidado, às dificuldades com a saúde geral da criança, às inseguranças com as características de sua deficiência. Superadas essas demandas, as mães passam a apresentar dúvidas e expectativas em relação à evolução e 9 prognóstico da criança, o que significa que passam a preocupar-se com a aquisição de marcha, linguagem e independência. As dificuldades com o peso e tamanho da criança, com a sexualidade e com o aparecimento de deformidades aparecem nas fases mais próximas à adolescência como demandas importantes. Espera-se que este estudo possa contribuir para o aumento do conhecimento na área e para maior compreensão das necessidades dessas famílias proporcionando elementos para reflexões e proposições de práticas de intervenção com esta população.