Literature DB >> 19548117

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-Thomas1, Lucy Lach, Annette Majnemer, Jodie Nimigon, Kelti Cameron, Michael Shevell.   

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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Mesh:

Year:  2009        PMID: 19548117     DOI: 10.1007/s11136-009-9501-3

Source DB:  PubMed          Journal:  Qual Life Res        ISSN: 0962-9343            Impact factor:   4.147


  13 in total

1.  Expectancy-Value Theory of Achievement Motivation.

Authors: 
Journal:  Contemp Educ Psychol       Date:  2000-01

Review 2.  Subjectifying quality of life as a medical rehabilitation outcome.

Authors:  M J Fuhrer
Journal:  Disabil Rehabil       Date:  2000-07-20       Impact factor: 3.033

3.  A report: the definition and classification of cerebral palsy April 2006.

Authors:  Peter Rosenbaum; Nigel Paneth; Alan Leviton; Murray Goldstein; Martin Bax; Diane Damiano; Bernard Dan; Bo Jacobsson
Journal:  Dev Med Child Neurol Suppl       Date:  2007-02

Review 4.  Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Authors:  Michael H Livingston; Peter L Rosenbaum; Dianne J Russell; Robert J Palisano
Journal:  Dev Med Child Neurol       Date:  2007-03       Impact factor: 5.449

5.  Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy.

Authors:  Annette Majnemer; Michael Shevell; Mary Law; Chantal Poulin; Peter Rosenbaum
Journal:  Qual Life Res       Date:  2008-09-27       Impact factor: 4.147

Review 6.  Evidence that school-age children can self-report on their health.

Authors:  Anne W Riley
Journal:  Ambul Pediatr       Date:  2004 Jul-Aug

7.  Determinants of life quality in school-age children with cerebral palsy.

Authors:  Annette Majnemer; Michael Shevell; Peter Rosenbaum; Mary Law; Chantal Poulin
Journal:  J Pediatr       Date:  2007-08-24       Impact factor: 4.406

Review 8.  Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review.

Authors:  Keiko Shikako-Thomas; Annette Majnemer; Mary Law; Lucyna Lach
Journal:  Phys Occup Ther Pediatr       Date:  2008-05       Impact factor: 2.360

9.  The relationship of cerebral palsy subtype and functional motor impairment: a population-based study.

Authors:  Michael I Shevell; Lynn Dagenais; Nicholas Hall
Journal:  Dev Med Child Neurol       Date:  2009-03-11       Impact factor: 5.449

10.  Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.

Authors:  Heather O Dickinson; Kathryn N Parkinson; Ulrike Ravens-Sieberer; Giorgio Schirripa; Ute Thyen; Catherine Arnaud; Eva Beckung; Jérôme Fauconnier; Vicki McManus; Susan I Michelsen; Jackie Parkes; Allan F Colver
Journal:  Lancet       Date:  2007-06-30       Impact factor: 79.321

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  13 in total

Review 1.  Health-related physical fitness for children with cerebral palsy.

Authors:  Désirée B Maltais; Lesley Wiart; Eileen Fowler; Olaf Verschuren; Diane L Damiano
Journal:  J Child Neurol       Date:  2014-05-11       Impact factor: 1.987

Review 2.  Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis of the literature.

Authors:  Noemi Dahan-Oliel; Keiko Shikako-Thomas; Annette Majnemer
Journal:  Qual Life Res       Date:  2011-11-19       Impact factor: 4.147

Review 3.  What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature.

Authors:  Nikki Ow; Adriana Appau; Mohamad Matout; Nancy E Mayo
Journal:  Qual Life Res       Date:  2021-02-07       Impact factor: 4.147

4.  Social participation: the perspectives of adolescents with cerebral palsy and their mothers.

Authors:  Priscila Bianchi Lopes; Keiko Shikako-Thomas; Roberta Cardoso; Thelma Simões Matsukura
Journal:  Int J Dev Disabil       Date:  2019-07-31

5.  Health-related quality of life of children and adolescents with functional disabilities in a northern Swedish county.

Authors:  Erik Domellöf; Ludmilla Hedlund; Pia Ödman
Journal:  Qual Life Res       Date:  2013-12-31       Impact factor: 4.147

6.  How do children at special schools and their parents perceive their HRQoL compared to children at open schools?

Authors:  Jennifer Jelsma; Lebogang Ramma
Journal:  Health Qual Life Outcomes       Date:  2010-07-21       Impact factor: 3.186

7.  Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis.

Authors:  Allan Colver; Marion Rapp; Nora Eisemann; Virginie Ehlinger; Ute Thyen; Heather O Dickinson; Jackie Parkes; Kathryn Parkinson; Malin Nystrand; Jérôme Fauconnier; Marco Marcelli; Susan I Michelsen; Catherine Arnaud
Journal:  Lancet       Date:  2014-10-07       Impact factor: 79.321

8.  Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection.

Authors:  Janette McDougall; Patricia Baldwin; Jan Evans; Megan Nichols; Cole Etherington; Virginia Wright
Journal:  Appl Res Qual Life       Date:  2015-01-07

9.  Parental Perspectives on Quality of Life in Adolescents with Cerebral Palsy.

Authors:  Prabhu Prajakta; Sunila John; Rajashekhar Bellur
Journal:  Indian J Psychol Med       Date:  2020-04-25

10.  Evaluation of the effectiveness of robotic gait training and gait-focused physical therapy programs for children and youth with cerebral palsy: a mixed methods RCT.

Authors:  Lesley Wiart; Rhonda J Rosychuk; F Virginia Wright
Journal:  BMC Neurol       Date:  2016-06-02       Impact factor: 2.474

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