Parents’ Perspectives on The Quality of Life of Adolescents With Cerebral Palsy: Trajectory, Choices And Hope

Parents’ Perspectives on The Quality of Life of Adolescents With Cerebral Palsy: Trajectory, Choices And Hope

Parents’ Perspectives on The Quality of Life of Adolescents With Cerebral Palsy: Trajectory, Choices And Hope

Parents’ Perspectives on The Quality of Life of Adolescents With Cerebral Palsy: Trajectory, Choices And Hopes

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Référence bibliographique [13179]

Disability and Rehabilitation, vol. 35, no 25, p. 2113-2122.

Fiche synthèse

1. Objectifs


Intentions :
«The present study aims at understanding the parents’ perspectives of their adolescents’ QoL [quality of life] in order to expand on the insights gained from the adolescents. Specifically, we wanted to understand how parents of adolescents with CP [cerebral palsy] perceive their child’s QoL and what aspects relating to the child, the child’s environment, and the disability may contribute to their perception of their adolescent’s QoL.» (p. 2114)

2. Méthode


Échantillon/Matériau :
L’étude est basée sur la participation de 16 adolescents montréalais (12 garçons et 4 filles) atteints de paralysie cérébrale de 14 de leurs parents (12 mères, 1 belle-mère, 1 père).

Instruments :
Guide d’entretien directif

Type de traitement des données :
Analyse de contenu

3. Résumé


«Parents of adolescents with CP who participated in this study constructed the QoL as a complex interaction of intrinsic and extrinsic aspects threaded by processes related to the trajectory of their child developing with a disability in the transition from childhood to adolescence and from adolescence to adulthood. These processes were seen as being framed by hope and choices. From the parents’ perspective, the interaction of these intervening factors along with contextual and adolescent-related aspects, composed the transitional experience of well-being for adolescents with CP. Adolescents’ and parents’ previous and current experiences and ability to foresee both subjectively and objectively the next steps to a happy life were considered essential for an overall sense of adolescent well-being.» (p. 2020)