“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

Lana E. De Clercq*, Peter Prinzie, Chris Swerts, Els Ortibus, Sarah S.W. De Pauw

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

7 Citations (Scopus)
196 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)295-329
Number of pages35
JournalJournal of Developmental and Physical Disabilities
Volume34
Issue number2
DOIs
Publication statusPublished - Apr 2022

Bibliographical note

Funding Information:
This work was supported by the [Bijzonder Onderzoeksfonds Starting Grant] under Grant [BOFSTA2017004601]; and [the Fund for Scientific Research Flanders] under Grant [FWO 12B4614N].

Publisher Copyright:
© 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

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