Being in pain: a phenomenological study of young people with cerebral palsy

Authors

  • Kirstyn Castle BOT (Hons),

    1. Occupational Therapist, Mooroolbark Early Intervention Program and Monash Medical Centre, Melbourne, Victoria, Australia
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  • Christine Imms BAppSc (OT) Msc (RS),

    Corresponding author
    1. Lecturer, School of Occupational Therapy, La Trobe University; Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
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  • Linsey Howie PhD MA BA Dip OT Acc OT

    1. Associate Professor and Head, School of Occupational Therapy, La Trobe University, Melbourne, Victoria, Australia
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* Correspondence to second author at School of Occupational Therapy, La Trobe University, Melbourne 3086, Victoria, Australia. E-mail: c.imms@latrobe.edu.au

Abstract

This study explored the experience and impact of chronic pain on the lives of adolescents and young adults with cerebral palsy (CP). Six participants with CP (four males, two females; age range 14-24y) who were known to experience chronic pain participated in individual in-depth interviews. Five participants had quadriplegia and used wheelchairs; one had left hemiplegia and walked independently. Pain was located in the hips, back, bladder, and upper limbs. Interviews were analyzed using a six-step phenomenological process. Participants in the study were found to live with constant pain that was difficult to relieve and pervaded their lives. They often felt isolated and became frustrated due to their loss of independence and inability to participate in activities. Participants indicated the importance of having their experience of pain acknowledged, supporting the need for greater attention to ongoing holistic management. Further research into effective interventions may enable increased activity participation and prevent later chronicity.

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