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Parents’ Need-Related Experiences When Raising an Adolescent with Cerebral Palsy

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Advances in Neurodevelopmental Disorders Aims and scope Submit manuscript

Abstract

Objectives

Raising a child with cerebral palsy (CP) has been shown to strongly affect parents’ well-being and is often described as challenging or complex. Although quantitative studies have shown that these parents are at risk for increased levels of stress, a more comprehensive and in-depth insight into their experiences is needed in order to better understand these parents and to effectively support them. By relying on a self-determination theory perspective, this qualitative study puts the basic psychological needs for autonomy, relatedness, and competence forward as a structuring framework to explore both possibilities for need-satisfying experiences as well as risks for need-frustrating experiences when raising an adolescent with CP.

Methods

Nine parents of adolescents with CP, aged 10 to 18 years, participated in an in-depth interview concerning their need-related experiences in raising their son or daughter with CP. The data were analyzed with deductive thematic analysis.

Results

Parents’ experiences were classified into five themes and nine subthemes. Next to the need-related themes, the themes “accepting the diagnosis” and “uncertainty about the future” were also identified as essential to capture parents’ experiences.

Conclusions

Although raising an adolescent with CP entails threats for parents’ need for autonomy, relatedness, and competence, it can also offer opportunities to feel closely connected with others and to feel effective when achieving unexpected goals. In order to fully capture parents’ experiences, we also need to take into account their acceptance of the diagnosis and their worries about the future.

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Acknowledgments

The authors wish to thank all the participating families for sharing their experiences.

Funding

This research was funded by grants from the Marguerite-Marie Delacroix Support Fund (GV/B-202) and the Fund for Scientific Research Flanders (FWO) (11X6516N).

Author information

Authors and Affiliations

  1. Department of Developmental, Personality and Social Psychology, Ghent University, Henri Dunantlaan 2, 9000, Ghent, Belgium

    Lisa M. Dieleman

  2. Ghent University, Henri Dunantlaan 2, 9000, Ghent, Belgium

    Roos Van Vlaenderen

  3. Faculty of Social Sciences, Department of Psychology, Education & Child Studies, Erasmus University Rotterdam, Burg. Oudlaan 50, 3000 DR, Rotterdam, The Netherlands

    Peter Prinzie

  4. Department of Special Needs Education, Ghent University, Henri Dunantlaan 2, 9000, Ghent, Belgium

    Sarah S.W. De Pauw

Authors
  1. Lisa M. Dieleman
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  2. Roos Van Vlaenderen
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  3. Peter Prinzie
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  4. Sarah S.W. De Pauw
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Contributions

LD conceived of the study, participated in the design of the study, assisted with the analyses, and drafted the manuscript. RVV participated in the design of the study, collected the data, conducted the analyses, and collaborated in drafting the manuscript. PP collaborated in the editing of the manuscript. SDP participated in the design of the study, assisted with the analyses, and collaborated in writing and editing the manuscript.

Corresponding author

Correspondence to Lisa M. Dieleman.

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The authors declare that they have no conflict of interest.

Ethics Statement

The study received ethical approval from the Institutional Review Board of Ghent University, the Ethical commission of the Faculty of Psychology and Educational Sciences.

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Informed consent was obtained from all participants in this study.

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Dieleman, L.M., Van Vlaenderen, R., Prinzie, P. et al. Parents’ Need-Related Experiences When Raising an Adolescent with Cerebral Palsy. Adv Neurodev Disord 3, 204–219 (2019). https://doi.org/10.1007/s41252-019-00111-3

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  • DOI: https://doi.org/10.1007/s41252-019-00111-3

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