“Tell Me About Your Child, The Relationship with Your Child and Your Parental Experiences”: A Qualitative Study of Spontaneous Speech Samples Among Parents Raising a Child with and without Autism Spectrum Disorder, Cerebral Palsy or Down Syndrome

Abstract

Ample quantitative studies have shown that parents raising children with neurodevelopmental disabilities are prone to experience more stress and challenges in their parenthood. Notwithstanding the strength of this line of research, qualitative studies are crucial to grasp the complex reality of these parenting experiences. This qualitative study adopted the Self-Determination Theory to analyze parents' described experiences, appraising both challenges and opportunities in parents' psychological need for autonomy, relatedness, and competence. A multi-group comparative design is adopted to examine similarities and differences in the perspectives of 160 parents raising an adolescent with autism spectrum disorder, cerebral palsy, Down syndrome, or without a disability (M age child = 13.09 years, 67.5% boys). Parents' perspectives were examined through speech samples probing parents to talk spontaneously about their child, their relationship with the child, and their parental experiences. Forty samples in each group were randomly chosen from a larger dataset and were analyzed using deductive thematic analysis. Parents of children with a disability described more need-frustrating but also more autonomy-satisfying experiences compared to parents of children without a disability. Parents of children with autism spectrum disorder reported the most challenges concerning their relatedness with their child and their own parental competence. Parents raising a child with cerebral palsy expressed the most worries about their child's future and continuity of care. Parents of a child with Down syndrome described the most need-satisfying experiences in their family life. This study offers a more balanced view on the realm of parenting a child with a neurodevelopmental disability.

The comparison of expressed emotion of parents of individuals with fragile X syndrome to other intellectual disabilities

“…Furthermore, for children with fragile X syndrome, parent EE profiles of increased warmth coupled with decreased criticism are associated with better behavioural outcomes (Greenberg et al, 2012). Research on EE in parents of children with Down syndrome is more limited but initial findings suggest a pattern of high parent warmth (De Clercq et al, 2022). Beck et al (2004)…”

“…Furthermore, for children with fragile X syndrome, parent EE profiles of increased warmth coupled with decreased criticism are associated with better behavioural outcomes (Greenberg et al, 2012). Research on EE in parents of children with Down syndrome is more limited but initial findings suggest a pattern of high parent warmth (De Clercq et al, 2022). Beck et al (2004) found lower EE than expected in a sample of parents of children with ID and hypothesized that the high proportion of children with Down syndrome in their sample may have skewed their results due to the ‘Down syndrome advantage’ within intellectual disability populations.…”

“…However, despite ample literature documenting increased stress, there is also evidence for positive parenting experiences of parents of children with intellectual disabilities, such as close and loving relationships with the child and a sense of increased meaning and purpose in life (Green, 2007; Hastings & Taunt, 2002; Thompson et al, 2020). Furthermore, parenting experiences can vary widely within different populations of intellectual disabilities based on parent coping strategies and demographic factors (Poehlmann et al, 2005), comorbid diagnoses (De Clercq et al, 2022), and genetic causes (Sterling & Warren, 2018).…”

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…x De Clercq, Prinzie, Swerts, et al, 2022 This qualitative study aims to provide a deeper understanding of the perspectives of parents raising an adolescent with ASD, CP, and DS and a reference group of parents raising a child without any known disability (i.e., reference group).…”

Reassurance Seeking Behavior and Interpersonal Difficulties in University Students: Mediating Role of Self-Esteem

“…Failure to adjust to the social world may lead students to increase the likelihood of suffering from various psycho-social problems (Lange & Couch, 2011;Saleem et al, 2014). Most typical difficulties encountered by university students are mood disruptions, problematic behavior, interpersonal problems, and deterioration of self-esteem (Chung et al, 2017;Matin & Khan, 2017) which are associated with numerous adverse outcomes including low self-esteem, loneliness, substance use and poor academic performance (De Clercq et al, 2022;New & Ghafar, 2016).…”