Parenting a child with Down syndrome: A qualitative study on parents' experiences and behaviors from a self-determination theory perspective.

PURPOSE: Raising a child with Down syndrome (DS) brings unique challenges to parents' psychological functioning. Extensive quantitative research has shown that these parents tend to experience higher levels of parental stress and lower well-being. However, a more in-depth and balanced insight is essential to fully grasp the complexity of parenting a child with DS. To address this gap, this study uses a qualitative approach to explore the experiences and behaviors of parents raising a child with DS.

DESIGN AND

METHODS

By adopting the Self-Determination Theory as a comprehensive theoretical framework, this study attends to both opportunities and challenges for parents' psychological needs of autonomy, relatedness, and competence, and provides insights into how they support the psychological needs of their child with DS. Eleven in-depth interviews were conducted with parents of a child with DS (aged 4 to 23 years).

RESULTS

Through thematic analysis, six themes of parental experiences and three themes of parenting behaviors were distinguished.

CONCLUSIONS

The findings indicated that parents experience many opportunities for need satisfaction, predominantly in their need for relatedness. However, raising a child with DS also involves challenges for the parents' family relationships, personal freedom, professional ambitions, and feelings of competence. Regarding their parenting behaviors, parents considered stimulating independence, tuning into the child's mental world, and being patient as essential practices when raising a child with DS.

PRACTICAL IMPLICATIONS: This study provides important clues to promote parents' well-being as well as their engagement in need-supportive parenting practices towards their child with DS.