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Doctoral Thesis
DOI
https://doi.org/10.11606/T.59.2000.tde-19112008-214630
Document
Author
Full name
Neucideia Aparecida Silva Colnago
E-mail
Institute/School/College
Knowledge Area
Date of Defense
Published
Ribeirão Preto, 2000
Supervisor
Committee
Alves, Zelia Maria Mendes Biasoli (President)
Graminha, Sonia Santa Vitaliano
Nunes, Leila Regina D'Oliveira de Paula
Pardo, Maria Benedita Lima
Sigolo, Silvia Regina Ricco Lucato
Title in Portuguese
Orientação para Pais de Crianças com Síndrome de Down: Elaborando e Testando um Programa de Intervenção
Keywords in Portuguese
Crianças-síndrome de Down
Orientação-pais
Programa de Intervenção.
Abstract in Portuguese
Os objetivos da presente pesquisa foram: elaborar, implementar e avaliar um Programa de Orientação (PO) para grupo de pais de bebês com Síndrome de Down (SD). Tal programa foi elaborado a partir de um levantamento de necessidade das famílias. Participaram do estudo dois grupos de pais: Estudo I (três famílias) e Estudo II (cinco família), com crianças com SD e idades entre um mês e quinze meses. Utilizou-se um Roteiro de Entrevista SemiEstruturado e Entrevistas de Avaliação do PO. O programa do Estudo II foi aperfeiçoado em relação ao do Estudo I nos aspectos formais e quanto ao conteúdo, visando atender mais adequadamente às necessidades dos pais. Foram implementadas 10 sessões (Estudo I) e 13 sessões (Estudo II) audiogravadas, de 90 a 120 minutos, realizadas semanalmente numa escola da cidade de São Carlos, SP, nas quais se discutiram o desenvolvimento na primeira infância, as dificuldades da família para lidar com a criança deficiente, suas angústias e depressão, o que é SD e quais suas implicações para o desenvolvimento da criança. Os resultados das análises qualitativas das sessões de grupo evidenciaram que os pais precisam se reorganizar, após o nascimento do bebê com problemas. Eles, sozinhos, não conseguiram transformar os sentimentos de tristeza, frustração em relação ao filho deficiente. Todas as famílias apresentaram alto grau de estresse, principalmente no primeiro ano de vida da criança. As análises mostraram, ainda, que à medida em que elas iam aprendendo sobre o desenvolvimento da criança, as formas de cuidá-la, ocorria a percepção de que o filho estava evoluindo, atingindo os marcos do desenvolvimento e o estresse parental também ia diminuindo. Relataram a necessidade de terem suporte de um profissional especializado logo após o nascimento do bebê. Os resultados da avaliação dos pais sobre o programa de orientação mostraram que este foi eficaz, na medida em que abordou as necessidades apresentadas por eles, e foi importante para eles obter informações sobre o desenvolvimento natural da criança, pois isso lhes forneceu subsídios para agir e tomar decisões quanto à sua socialização. O espaço criado para as discussões em grupo possibilitou a troca de experiências quanto ao cuidado da criança e permitiu que as famílias falassem de suas angústias e expectativas. Este modelo de intervenção procurou mostrar aos pais a importância de sua participação ativa no processo de desenvolvimento da criança, dando-lhes suporte informativo e emocional.
Title in English
Preparing and testing an intervention program: orientation to parents of Down Syndrome children
Keywords in English
Down Syndrome children
Intervention Program
Orientation - parents
Abstract in English
The objectives of the present research were: to elaborate, apply, and evaluate an Orientation Program (OP) for a group of parents with Down's Syndrome (DS) babies. An initial study of daily living conditions and special needs of such families was conducted, and used as a basis for creating and implementing a series of orientation sessions for parents in order to provide emotional support and general information concerning development of their child during infancy. The sample was composed of two groups of parents: Study I (three families) and Study II (five families) with Down Syndrome (DS) children of from one to fifteen months. A Semi-Structured Interview was used as was an evaluation protocol to determine the effectiveness of these sessions (OP). Study II was the result of improving structure and content of Study I so as to meet the parents needs more effectively. Initially, ten sessions were held in a school in São Carlos, SP. ( Study I); thirteen sessions ( Study II) of from 90 to 120 minutes were then audiotaped weekly. Group sessions covered early childhood development, addressing issues raised by the parents concerning difficulties experienced in dealing with a developmentally delayed child, answering questions concerning these delays, and advising them about what to expect in terms of developmental progress. In addition, opportunities were offered for participants to share their worries and any feelings of anguish or depression. Qualitative analyses of the group sessions showed a parental need for regrouping following birth of a problematic baby and, particulary, for finding the necessary assistence in coping emotionally with their situation. All the families were shown to have experiencied a high stress degree, mainly in the first year. The analyses show, though, that as learning about child development and ways of caring continued, parental capacity to perceive the milestones in their child's evolution sharpened, there bye decreasing parental stress. The parents expressed need for professional support soon after the baby's birth. The results of parental evaluation of the program showed its effectiveness. Our findings highlight the importance of responding to parental need for information concerning their child's early development, addressing the painful emotional reactions experienced day-to-day coping, and discussing the relationships of immediate family members with the DS baby. The orientation sessions provide a means for these parents to understand the difficulties faced and plan more effective strategies for socializing their developmentally delayed child. Group discussions facilitated exchange of experiences in caring for the children and provided a space for the families to express their anguishes and discuss expectations. This intervention model aimed to show the parents the importance of their active participation in the child's development process by providing them with both information and emotional support
 
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Teseneucideia.pdf (872.82 Kbytes)
Publishing Date
2008-12-22
 
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