Parenting a child with Down syndrome: A qualitative study of everyday practices in Danish families

Genetic counseling about Down syndrome is suggested to include information on a future family life. However, there is an insufficient knowledge on the potential impact of parenting a child with Down syndrome on parents' everyday practices. We aimed to address this gap by exploring the experienced everyday practices of parents in families where a child has Down syndrome. Taking a qualitative approach, we conducted semi-structured interviews with 25 parents of children with Down syndrome aged 4-12 years. Using reflexive thematic analysis, we identified two themes concerned with the parents' practice. The first, 'Supporting our child', describes how the parents perceived their child as a valuable human being and how this perception founded parents' support of the child's development and social interactions. The second, 'Managing our family life', demonstrates how the parents acted to manage a family life that had become the 'new normal' including being alert toward the child, shaping the practical and logistical framework of daily life, and balancing between being at home and away from home. Overall, the analysis presents an everyday practice aimed at a desirable future for the child with Down syndrome and at a management of everyday life on the family's own terms. In conclusion, this study provides specific knowledge on parents' everyday practice, which may inform genetic counseling about Down syndrome and be of value to service providers.