Parents’ need-related experiences when raising an adolescent with cerebral palsy

Lisa M. Dieleman*, Roos Van Vlaenderen, Peter Prinzie, Sarah S.W. De Pauw

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

8 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)204-219
Number of pages16
JournalAdvances in Neurodevelopmental Disorders
Volume3
Issue number2
DOIs
Publication statusPublished - 15 Jun 2019

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