Parents’ perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope

Abstract

Introduction: Quality of life (QoL) is an important outcome of health interventions for children and youth with cerebral palsy (CP). When planning interventions it is fundamental to understand what constitutes a good QoL, a subjective construct, and what factors are important to consider from both parents’ and children’s perspectives. Methods: We used a grounded theory methodology to explore parents’ perspectives on the factors that are important for the QoL of their adolescents with CP. Fourteen parents were interviewed using a purposeful sampling strategy, followed by theoretical sampling until saturation was reached. Results: Parents reflected on several important aspects of their children’s QoL. In particular, they described how their trajectories as parents of a child with a disability have contributed to their adolescents’ current well-being. Over time, parents’ hopes for a cure were transformed into hopes for their child’s happiness. This trajectory was influenced by the adolescents’ intrinsic characteristics and the parents’ strategies to overcome challenges and was informed by the parents’ and their children’s ability to make choices in pursuit of their preferences. Conclusions: Adolescents’ and parents’ accounts should be considered when planning interventions for adolescents with disabilities. It is important to consider parents’ personal characteristics, experiences and the strategies that have been proven to be efficacious in improving their children’s QoL and to understand their need to make choices relating to participation and accessibility in order to promote QoL for this at-risk population.

Implications for Rehabilitation

• Parents’ trajectory on raising a child with a disability is important for understanding adolescents’ QoL.

• Parents’ characteristics and environmental factors influence adolescents’ well-being.

• Hope and choice experiences by parents of children with CP are important for their children’s QoL.

• Transition from pediatric to adult services are required to address disability-related aspects as well as adolescent needs for intimacy, sexuality and planning for their future during adolescence.

• Adolescent
• cerebral palsy
• quality of life
• quality of methodology

Acknowledgements

We would like to thank the families who participated in the study.

Contributor’s Statement Page

Keiko Shikako-Thomas – Participated in the conception of the study, recruitment and data analysis. Drafted the manuscript for the co-authors revision and formatted the paper for submission.

Aline Bogossian – Acquisition of data and data analysis. Drafted the manuscript for the co-authors revision.

Lucyna M. Lach – Conception of the study and data analysis. Critically reviewed the manuscript for submission.

Michael Shevell – Participated in the conception of the study and recruitment. Critically reviewed the manuscript for submission.

Annette Majnemer – Conception of the study and data analysis. Critically reviewed the manuscript for submission.