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“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.

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Availability of Data and Material

Due to the longitudinal character of the study, the data and materials will not be deposited in a public repository.

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Acknowledgments

The authors thank the participating families to share their perspectives, and the care facilities to enthusiasm parents to participate in the study.

Funding

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

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Authors

Contributions

All authors contributed to the study conception and design. Data collection was performed by Lana E. De Clercq. The data analysis and the research findings were discussed with all authors. The first draft of the manuscript was written by Lana E. De Clercq and all authors commented on previous versions of the manuscript, and read and approved the final manuscript.

Corresponding author

Correspondence to Lana E. De Clercq.

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Ethics Approval

The study received ethical approval from the Ethics Committee of Ghent University, Belgium, in accordance with the Declaration of Helsinki (1964) and its later amendments or comparable ethical standards. These standards include obtaining written informed consent from participants, maintaining ethical treatment and ensuring the privacy of participants and their data.

Consent for Publication

All individual participants included in this study gave their written consent for information about themselves and their child to be published anonymously.

Consent to Participate

Written informed consent was obtained from all individual participants included in the study.

Conflicts of Interest

Sarah S. W. De Pauw has received research grants from the [Bijzonder Onderzoeksfonds Starting Grant] under Grant [BOFSTA2017004601] and [the Fund for Scientific Research Flanders] under Grant [FWO 12B4614N]. Currently, a manuscript, which examined a larger sample of parents’ spontaneous speech sample of which a part is also included in this manuscript, is under review (De Clercq et al., 2021). However, whereas the previously submitted manuscript examined these speech samples using a quantitative design to examine the construct of Expressed Emotion (e.g., based on a structured coding scheme by Magana 1993), this is the first paper that examined parent’s perspectives through parents’ spontaneous speech samples using a qualitative design. No authors reported any financial or other conflicts of interest in relation to the work described. None of the funders of this research had any role in the design and conduct of the study; collection, management, analysis, and interpretation of data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.

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De Clercq, L.E., Prinzie, P., Swerts, C. et al. “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. J Dev Phys Disabil (2021). https://doi.org/10.1007/s10882-021-09800-1

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Keywords

  • Parenting perspectives
  • Self-Determination Theory
  • Autism Spectrum Disorder
  • Cerebral Palsy
  • Down Syndrome