Famílias com filhos com síndrome de Down: uma análise sistêmica dos subsistemas conjugal e fraternal

Abstract

The birth of a child with Down’s syndrome (DS) may have implications at family functioning and relationships established among family members. The literature indicates that parents of children with DS have good levels of marital satisfaction and similar levels of marital adjustment of parents of children with typical development (TD). In addition, the sibling relationship in these families has been described as positive, with characteristics of friendship, affection, companionship and synchrony. There is a tendency that the sibling with TD take the lead during the interactive episodes, presenting directive behaviors over the sibling with DS. This study aims to describe the quality of marital and sibling relationships in families with children with DS and the possible associations of the quality of these relationships, from the systemic perspective. The participants of this study were 17 families, four of them composed of father, mother and biological child with diagnosis of DS and 13 families composed of father, mother, biological child with SD and at least one child with TD. Data were collected in the families' homes and included these instruments and techniques: Questionnaire for Characterizing the Family System, semi-structured interviews, Dyadic Adjustment Scale, Observation of interactions between marital dyads using video technology, Sibling’s Questionnaire and Sibling Relationship Questionnaire. The results demonstrate that the marital relationships are characterized as friendly and adjusted, with good levels of consensus, cohesion, satisfaction and affectional expression. The interactions are marked by proximity and friendly atmosphere between the couple. Both spouses tend to participate actively and equitably in the discussion, valuing and recognizing one's position and ideas of each other. The sibling relationships are characterized by affection, closeness and companionship, with low levels of conflict and rivalry. The siblings with TD assume an older sibling's posture and have caring and protective behaviors with the sibling with DS. There is a positive association between dyadic conjugal cohesion and warmth/closeness between siblings. The wives of couples with inadequate adjustment perceive more rivalry in the sibling relationship of their children. Whereas the siblings in the families of couples with inadequate adjustment evaluate their relationship with their sibling with DS as having more conflicts than in families with adjusted couples. It is important to conduct longitudinal studies that use the multi-method approach and investigate the interrelationship between the different family subsystems to better understand the relationships developed in the families of people with DS.