Quality of Life Research

, 18:825

Quality of life from the perspective of adolescents with cerebral palsy: “I just think I’m a normal kid, I just happen to have a disability”

  • Keiko Shikako-Thomas
  • Lucy Lach
  • Annette Majnemer
  • Jodie Nimigon
  • Kelti Cameron
  • Michael Shevell
Article

DOI: 10.1007/s11136-009-9501-3

Cite this article as:
Shikako-Thomas, K., Lach, L., Majnemer, A. et al. Qual Life Res (2009) 18: 825. doi:10.1007/s11136-009-9501-3

Abstract

Purpose

The aim of this qualitative study was to obtain the perspectives of adolescents with cerebral palsy (CP) on factors that positively or negatively influence their quality of life (QoL).

Methods

Using constructivist grounded theory, adolescents (12–16 years) were interviewed to obtain their accounts of intrinsic and extrinsic attributes that made a difference in their satisfaction with life. A purposive and theoretical sample of 12 adolescents was obtained. Narratives were coded into categories and themes, which were initially broadly defined as intrinsic (child-related) and extrinsic (environmental) factors, and then were further differentiated as analysis progressed.

Results

Participants reflected on their quality of life as an interaction between intrinsic and extrinsic factors. The predominant theme that emerged involved a relationship between personal interests and preferences (intrinsic) and opportunities to participate in age-appropriate activities and leisure activities (extrinsic). Opportunities to participate in activities that the adolescents value affect their perceived quality of life and this perception was consistent regardless of the objective level of motor impairment.

Conclusion

Health care providers should take into consideration what adolescents with CP value the most. The identification of attributes that can be modified such as accessibility to and competence in, and preference for different activities may help professionals to advocate for greater participation in these activities and tailor individual therapeutic strategies accordingly, increasing the likelihood of enhancing the quality of life of this population.

Keywords

Cerebral palsy Quality of life Qualitative methodology Adolescents 

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Keiko Shikako-Thomas
    • 1
    • 2
  • Lucy Lach
    • 3
    • 4
  • Annette Majnemer
    • 1
    • 2
  • Jodie Nimigon
    • 4
  • Kelti Cameron
    • 3
  • Michael Shevell
    • 2
    • 5
    • 6
  1. 1.School of Physical and Occupational TherapyMcGill UniversityMontrealCanada
  2. 2.Division of Pediatric NeurologyMontreal Children’s HospitalMontrealCanada
  3. 3.School of Social WorkMcGill UniversityMontrealCanada
  4. 4.Centre for Research on Children and FamiliesMcGill UniversityMontrealCanada
  5. 5.Department of Neurology and NeurosurgeryMcGill UniversityMontrealCanada
  6. 6.Department of PaediatricsMcGill UniversityMontrealCanada

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