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

Authors
  • Dieleman, Lisa M.1
  • Van Vlaenderen, Roos2
  • Prinzie, Peter3
  • De Pauw, Sarah S.W.4
  • 1 Ghent University, Department of Developmental, Personality and Social Psychology, Henri Dunantlaan 2, Ghent, 9000, Belgium , Ghent (Belgium)
  • 2 Ghent University, Henri Dunantlaan 2, Ghent, 9000, Belgium , Ghent (Belgium)
  • 3 Erasmus University Rotterdam, Faculty of Social Sciences, Department of Psychology, Education & Child Studies, Burg. Oudlaan 50, Rotterdam, 3000 DR, The Netherlands , Rotterdam (Netherlands)
  • 4 Ghent University, Department of Special Needs Education, Henri Dunantlaan 2, Ghent, 9000, Belgium , Ghent (Belgium)
Type
Published Article
Journal
Advances in Neurodevelopmental Disorders
Publisher
Springer International Publishing
Publication Date
Apr 25, 2019
Volume
3
Issue
2
Pages
204–219
Identifiers
DOI: 10.1007/s41252-019-00111-3
Source
Springer Nature
Keywords
License
Yellow

Abstract

ObjectivesRaising 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.MethodsNine 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.ResultsParents’ 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.ConclusionsAlthough 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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