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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”

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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.

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Acknowledgments

The Fonds de Recherche en Santé du Quebec (FRSQ) provides infrastructure support to the Montreal Children’s Hospital Research Institute. This study was supported by the MCH Research Institute clinical projects funding and FRSQ provided studentship support (K. S.-T.). We would like to thank Nick Hall for research assistance, France Martineau, Michele Gardiner, Kathleen Montpetit and Sylvie Thibault for their assistance with recruitment in the three rehabilitation centers, We are especially thankful to the adolescents and their families for participating and sharing their personal perspectives with us.

Conflict of interest statement

The authors report no conflicts of interest.

Author information

Authors and Affiliations

  1. School of Physical and Occupational Therapy, McGill University, 3654 Promenade Sir William Osler, Montreal, QC, H3G 1Y5, Canada

    Keiko Shikako-Thomas & Annette Majnemer

  2. Division of Pediatric Neurology, Montreal Children’s Hospital, Rm. A-509 2300 Tupper Street, Montreal, QC, H3H 1P3, Canada

    Keiko Shikako-Thomas, Annette Majnemer & Michael Shevell

  3. School of Social Work, McGill University, 3506 Avenue University, Montreal, QC, H3A 2A7, Canada

    Lucy Lach & Kelti Cameron

  4. Centre for Research on Children and Families, McGill University, 3506 Avenue University, Montreal, QC, H3A 2A7, Canada

    Lucy Lach & Jodie Nimigon

  5. Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada

    Michael Shevell

  6. Department of Paediatrics, McGill University, Montreal, QC, Canada

    Michael Shevell

Authors
  1. Keiko Shikako-Thomas
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  2. Lucy Lach
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  3. Annette Majnemer
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  4. Jodie Nimigon
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  5. Kelti Cameron
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  6. Michael Shevell
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Corresponding author

Correspondence to Annette Majnemer.

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Shikako-Thomas, K., Lach, L., Majnemer, A. et al. 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”. Qual Life Res 18, 825–832 (2009). https://doi.org/10.1007/s11136-009-9501-3

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  • DOI: https://doi.org/10.1007/s11136-009-9501-3

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