O síndrome de Williams e o contexto família: um estudo piloto

Objectives: The present pilot study on the psychosocial situation of families with a member with Williams syndrome highlights how families cope with the child’s Williams syndrome in their everyday life. Methods: Three families participated in the qualitative study. Each family’s member (mother, father, child with the Williams syndrome and sibling) was interviewed using a protocol specifically developed for the project. The interviews were reported and interpreted with reference to the stress model of Schneewind and the ecological model of Bronfenbrenner. Results: The family’s members demonstrated different ways of coping depending on personal and family’s resources, stressors and stressor perception, although there was a common tendency of coping within family member’s group (mother, father, child with Williams syndrome and sibling). Conclusions: The findings support the need for a better understanding of families with a member with Williams syndrome, from the perspective of each family member including the one affected by the syndrome.