Looking to the future: adolescents with cerebral palsy talk about their aspirations – a narrative study

Abstract

Purpose: To explore the future hopes and aspirations of adolescents with cerebral palsy (CP) with a particular focus on their reflections on engagement in leisure activities. Method: This qualitative study used narrative inquiry methodology. Ten adolescents, aged 14–16 years with CP and Manual Ability Classification System levels ranging from I–IV, were purposively sampled from a longitudinal study of leisure participation. Data were gathered during two face–face interviews conducted approximately 1 month apart. Between interviews, photographs were taken by the adolescents to represent their visions of their future aspirations. In accordance with narrative inquiry methodology, the results were presented as individual stories constructed by the researcher. These narratives were subsequently analysed to produce themes representing the participants’ reflections on their future. Results: Three themes were developed: (i) Keeping close relationships, (ii) Choosing a future life of one’s own, (iii) Leisure in the years ahead. All the adolescents had aspirations for education, work, leisure and living situation. Conclusion: This study highlights the value of seeking information from adolescents with CP and suggests clinicians be aware of, and work to support their expectations for future study, employment and recreational engagement.

Implications for Rehabilitation

• To our knowledge, this is the first recent study to describe the aspirations of adolescents with cerebral palsy. The study findings reinforce the value of seeking information directly from the adolescents themselves.

• These adolescents with cerebral palsy had clear aspirations for future education, work, fun, friendship and travel. Although these aspirations seem common to us all, recent research into adult outcomes suggests adolescents with cerebral palsy will need focused support to attain their goals.

• The results highlight the need for educational and health professionals to be future-focused, to take a lifespan perspective, when working with adolescents with childhood disability.

Keywords::

• Adolescent
• aspirations
• cerebral palsy
• leisure activities
• occupational therapy

Acknowledgments

The authors wish to acknowledge the valuable contribution of the adolescents who took part in this study.

Declaration of Interest: This study was undertaken by Amy Cussen as partial fulfilment of the requirements of Bachelor of Occupational Therapy (honours). Financial support for this project was provided from grants from the Faculty of Health Science, La Trobe University and the Murdoch Childrens Research Institute.