Preparing and testing an intervention program: orientation to parents of Down Syndrome children

Author(s)

Neucideia Aparecida Silva Colnago

• Document type: Doctoral Thesis
• Press: Ribeirão Preto.
• Institution: Universidade de São Paulo (USP). Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (PCARP/BC)
• Defense date: 2000-11-17

Examining board members

Zelia Maria Mendes Biasoli Alves; Sonia Santa Vitaliano Graminha; Leila Regina D\'Oliveira de Paula Nunes; Maria Benedita Lima Pardo; Silvia Regina Ricco Lucato Sigolo

• Advisor: Zelia Maria Mendes Biasoli Alves

Abstract

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 (AU)