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.

Expressed Emotion in Families of Children With and Without Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome: Relations with Parenting Stress and Parenting Behaviors.

This study examined the family emotional climate as assessed by Five Minute Speech Samples and the relation with parenting stress and parenting behaviors among parents of children (6-17 years, 64.7% boys) with autism spectrum disorder, cerebral palsy, Down syndrome, and without any known disability (n = 447). The large majority of parents (79%) showed low levels of Expressed Emotion, an indicator of a positive family climate. In all groups, more Emotional Over-involvement, more Criticism and fewer expressions of Warmth were associated with higher levels of parenting stress. Across groups, Emotional Over-involvement was related to more autonomy-supportive parenting, Criticism to more psychologically controlling and overreactive parenting, and Warmth was associated with more responsive and less psychologically controlling and overreactive parenting.

Parenting and Child Personality as Modifiers of the Psychosocial Development of Youth with Cerebral Palsy.

This two-year longitudinal study addressed the joint contribution of parent-rated parenting behaviors and child personality on psychosocial outcomes in 118 families of children with Cerebral Palsy (M age Time 1 = 10.9 years old, 64.4% boys). Latent change modeling revealed intra-individual changes in children's psychosocial development as internalizing and externalizing behaviors increased from the first to the second assessment and psychosocial strengths increased from the second to the third assessment, whereas externally controlling and autonomy-supportive parenting behavior remained stable over time. Externally controlling parenting related to higher levels of, and increases in behavioral problems, with these associations being most pronounced among children low on Extraversion, Conscientiousness, or Imagination. Autonomy-supportive parenting related to higher levels of psychosocial strengths, with this association being most pronounced among children high on Emotional Stability.

Negative Controlling Parenting and Child Personality as Modifiers of Psychosocial Development in Youth with Autism Spectrum Disorder: A 9-Year Longitudinal Study at the Level of Within-Person Change.

This nine-year longitudinal study addresses the joint contribution of parent-rated negative controlling parenting and child personality on psychosocial outcomes in 141 families of children with autism spectrum disorder (83% boys, mean age Time 1 = 10.1). Latent change modeling revealed substantial variation in within-person change in parenting and psychosocial outcomes across a six- and three-year-interval. Over time, negative controlling parenting and child personality were consistently related to externalizing problems, whereas child personality was differentially related to internalizing problems and psychosocial strengths. Three personality-by-parenting interactions were significant, suggesting that children with less mature personality traits show more externalizing behaviors in the presence of controlling parenting. This study identified both parenting and child personality as important modifiers of developmental outcomes in youth with autism.