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Gepubliceerd in: Quality of Life Research 7/2009

01-09-2009

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”

Auteurs: Keiko Shikako-Thomas, Lucy Lach, Annette Majnemer, Jodie Nimigon, Kelti Cameron, Michael Shevell

Gepubliceerd in: Quality of Life Research | Uitgave 7/2009

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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.
Literatuur
1.
go back to reference Missiuna, C., Smits, C., Rosenbaum, P., Woodside, J., & Law, M. (2001). Report to the ministry of health on the incidence and prevalence of childhood disability. Can Child, 2, 6–27. Missiuna, C., Smits, C., Rosenbaum, P., Woodside, J., & Law, M. (2001). Report to the ministry of health on the incidence and prevalence of childhood disability. Can Child, 2, 6–27.
2.
go back to reference Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., & Bax, M. (2007). The definition and classification of cerebral palsy. Developmental Medicine and Child Neurology, 49(Supplement), 8–14. Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., & Bax, M. (2007). The definition and classification of cerebral palsy. Developmental Medicine and Child Neurology, 49(Supplement), 8–14.
4.
go back to reference Livingston, M. H., Rosenbaum, P. L., Russel, D. J., & Palisano, R. J. (2007). Quality of Life among adolescents with cerebral palsy: What does the literature tell us? Developmental Medicine and Child Neurology, 49, 225–231.PubMedCrossRef Livingston, M. H., Rosenbaum, P. L., Russel, D. J., & Palisano, R. J. (2007). Quality of Life among adolescents with cerebral palsy: What does the literature tell us? Developmental Medicine and Child Neurology, 49, 225–231.PubMedCrossRef
5.
go back to reference Andrew, M. F., Kayes, N. M., & McPherson, K. M. (2008). Adolescents with physical disabilities—what matters most? New Zealand Journal of Physiotherapy, 36(2), 82–83. Andrew, M. F., Kayes, N. M., & McPherson, K. M. (2008). Adolescents with physical disabilities—what matters most? New Zealand Journal of Physiotherapy, 36(2), 82–83.
7.
go back to reference Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London, Thousand Oaks, CA: Sage Publications. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London, Thousand Oaks, CA: Sage Publications.
8.
go back to reference Race, D., Boxall, K., & Carson, I. (2005). Towards a dialogue for practice: Reconciling social role valorization and the social model of disability. Disability & Society, 20(5), 507–521. doi:10.1080/09687590500156196.CrossRef Race, D., Boxall, K., & Carson, I. (2005). Towards a dialogue for practice: Reconciling social role valorization and the social model of disability. Disability & Society, 20(5), 507–521. doi:10.​1080/​0968759050015619​6.CrossRef
9.
go back to reference Russell, D. J., Rosenbaum, P. L., Avery, L. M., & Lane, M. (2002). Gross motor function measure (GMFM-66 & GMFM-88) user’s manual. Mac Keith Press. Russell, D. J., Rosenbaum, P. L., Avery, L. M., & Lane, M. (2002). Gross motor function measure (GMFM-66 & GMFM-88) user’s manual. Mac Keith Press.
10.
go back to reference Seale, C. (1999). The quality of qualitative research. London, Thousand Oaks, CA: Sage Publications. Seale, C. (1999). The quality of qualitative research. London, Thousand Oaks, CA: Sage Publications.
11.
go back to reference Shevell, M. I., Dagenais, L., Hall, N., & REPACQ Consortium. (2009). The relationship of cerebral palsy subtype and functional motor impairment: A population-based study. Developmental Medicine and Child Neurology. doi:10.1111/j.1469-8749.2009.03270.x. Shevell, M. I., Dagenais, L., Hall, N., & REPACQ Consortium. (2009). The relationship of cerebral palsy subtype and functional motor impairment: A population-based study. Developmental Medicine and Child Neurology. doi:10.​1111/​j.​1469-8749.​2009.​03270.​x.
13.
go back to reference Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., et al. (2007). Self-reported quality of life of 8–12-year-old children with cerebral palsy: A cross-sectional European study. Lancet, 369(9580), 2171–2178. doi:10.1016/S0140-6736(07)61013-7.PubMedCrossRef Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., et al. (2007). Self-reported quality of life of 8–12-year-old children with cerebral palsy: A cross-sectional European study. Lancet, 369(9580), 2171–2178. doi:10.​1016/​S0140-6736(07)61013-7.PubMedCrossRef
16.
go back to reference Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., et al. (2007). Parent-proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research, 16(5), 863–871. doi:10.1007/s11136-007-9187-3 (Comparative Study Research Support, Non-U.S. Gov’t).PubMedCrossRef Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., et al. (2007). Parent-proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research, 16(5), 863–871. doi:10.​1007/​s11136-007-9187-3 (Comparative Study Research Support, Non-U.S. Gov’t).PubMedCrossRef
17.
go back to reference Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17(9), 1163–1171. doi:10.1007/s11136-008-9394-6.PubMedCrossRef Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17(9), 1163–1171. doi:10.​1007/​s11136-008-9394-6.PubMedCrossRef
18.
go back to reference Shikako-Thomas, K., Majnemer, A., Law, M., & Lach, L. (2008). Determinants of participation in leisure activities in children and youth with cerebral palsy: Systematic review. Physical & Occupational Therapy in Pediatrics, 28(2), 155–169. doi:10.1080/01942630802031834.CrossRef Shikako-Thomas, K., Majnemer, A., Law, M., & Lach, L. (2008). Determinants of participation in leisure activities in children and youth with cerebral palsy: Systematic review. Physical & Occupational Therapy in Pediatrics, 28(2), 155–169. doi:10.​1080/​0194263080203183​4.CrossRef
Metagegevens
Titel
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”
Auteurs
Keiko Shikako-Thomas
Lucy Lach
Annette Majnemer
Jodie Nimigon
Kelti Cameron
Michael Shevell
Publicatiedatum
01-09-2009
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 7/2009
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-009-9501-3

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