Quality of life and leisure participation in children with neurodevelopmental disabilities: A thematic analysis of the literature

Quality of Life Research

Volumn 21, Issue 3, 2012, Pages 427-439

  Dahan Oliel, Noemi ^a   Shikako Thomas, Keiko ^a   Majnemer, Annette ^a,b  

^a MCGILL UNIVERSITY   (Canada)

^b MONTREAL CHILDREN S HOSPITAL   (Canada)

Author keywords

Childhood disability; Leisure; Mixed methods; Neurodevelopmental disability; Participation; Physical activity; Quality of life; Thematic analysis

Indexed keywords

CHILD; FEMALE; HANDICAPPED CHILD; HUMAN; LEISURE; MALE; METHODOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; REVIEW;

CHILD; DISABLED CHILDREN; FEMALE; HUMANS; LEISURE ACTIVITIES; MALE; QUALITY OF LIFE; RESEARCH DESIGN;

EID: 84859620998     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-0063-9     Document Type: Review

References (40)

1. Skelton, H., & Rosenbaum, P. (2010). Disability and child development: Integrating the concepts. Keeping Current #2010-01. CanChild Centre for Childhood Disability Research. http://www.canchild.ca/en/canchildresources/ resources/KC-Dis ability-Child%20Development.pdf. Accessed 7 Feb. 2011.
2. McDougall, J., & Wright, V. (2009). The ICF-CY and goal attainment scaling: Benefits of their combined use for pediatric practice. Disability and Rehabilitation, 31(16), 1362-1372.
3. World Health Organization. (2007). International classification of functioning, disability and health-child and youth version. Geneva: WHO.
4. Law, M., King, G., King, S., Kertoy, M., Hurley, P., Rosenbaum, P., et al. (2006). Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Developmental Medicine and Child Neurology, 48(5), 337-342.
5. King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M. K., & Young, N. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational Therapy in Pediatrics, 23(1), 63-90. (Pubitemid 36443993)
6. King, G., Tucker, M. A., Baldwin, P., Lowry, K., LaPorta, J., & Martens, L. (2002). A life needs model of pediatric service delivery: Services to support community participation and quality of life for children and youth with disabilities. Physical & Occupational Therapy in Pediatrics, 22(2), 53-77. (Pubitemid 34976915)
7. The WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403-1409.
8. Voll, R. (2001). Aspects of quality of life of chronically ill and handicapped children and adolescents in outpatient and inpatient rehabilitation. International Journal of Rehabilitation Research, 24, 43-49. (Pubitemid 32217657)
9. Wilson, I., & Cleary, P. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA, 273(1), 59-65.
10. Dickinson, H. O., Parkinson, K. N., McManus, V., Arnaud, C., Beckung, E., Fauconnier, J., et al. (2007). Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. The Lancet, 369(9580), 2171-2178. (Pubitemid 46992753)
11. Rosenbaum, P. L., Livingston, M. H., Palisano, R. J., Galuppi, B. E., & Russell, D. J. (2007). Quality of life and health-related quality of life of adolescents with cerebral palsy. Developmental Medicine and Child Neurology, 49(7), 516-521. (Pubitemid 47018498)
12. Colver, A. (2009). Quality of life and participation. Developmental Medicine and Child Neurology, 51, 656-659.
13. Paisley, S., Booth, A., & Mensinkai, S. (2005). Chapter 12: Health-related quality of life studies. Etext on Health Technology Assessment (HTA) Information Resources. http://www.nlm.nih. gov/archive/20060905/nichsr/ ehta/chapter12.html. Accessed 7 Feb. 2011.
14. Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. BMJ, 339, 332-336.
15. Crowe, M., & Sheppard, L. (2011). A review of critical appraisal tools show they lack rigor: Alternative tool structure is proposed. Journal of Clinical Epidemiology, 64, 79-89.
16. Fereday, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5, 1-11.
17. Pluye, P., Gagnon, M. P., Griffiths, F., & Johnson-Lafleur, J. (2009). A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. International Journal of Nursing Studies, 46, 529-546.
18. Pluye P. (2011). Collaborative development of a mixed methods appraisal tool: A public WIKI workspace. http://mixedmethod sappraisaltoolpublic.pbworks. com/../../FrontPage. Accessed 8 Mar. 2011.
19. Verschuren, O., Ketelaar, M., Gorter, J. W., Helders, P. J. M., Uiterwaal, C. S. P. M., & Takken, T. (2007). Exercise training program in children and adolescents with cerebral palsy: A randomized controlled trial. Archives of Pediatrics and Adolescent Medicine, 161(11), 1075-1081. (Pubitemid 350074840)
20. Buffart, L. M., van den Berg-Emons, R. J., Buffart, L. M., van den Berg-Emons, R. J., van Mechelen, W., Van Meeteren, J., et al. (2009). Lifestyle, participation, and health-related quality of life in adolescents and young adults with myelomeningocele. Developmental Medicine and Child Neurology, 51(11), 886-894.
21. Gorzkowski, J. A., Kelly, E. H., Klaas, S. J., & Vogel, L. C. (2010). Girls with spinal cord injury: Social and job-related participation and psychosocial outcomes. Rehabilitation Psychology, 55(1), 58-67.
22. Bjornson, K. F., Belza, B., Kartin, D., Logsdon, R., McLaughlin, J., & Thompson, E. A. (2008). The relationship of physical activity to health status and quality of life in cerebral palsy. Pediatrics Physical Therapy, 20(3), 247-253.
23. Conant, K. D., Morgan, A. K., Muzykewicz, D., Clark, D. C., & Thiele, E. A. (2008). A karate program for improving self-concept and quality of life in childhood epilepsy: Results of a pilot study. Epilepsy & Behavior, 12(1), 61-65. (Pubitemid 350246364)
24. Odame, I., Duckworth, J., Talsma, D., Beaumont, L., Furlong, W., Webber, C., et al. (2006). Osteopenia, physical activity and health-related quality of life in survivors of brain tumors treated in childhood. Pediatric Blood & Cancer, 46(3), 357-362. (Pubitemid 43201853)
25. Pirpiris, M., Gates, P. E., McCarthy, J., D'Astour, J., Tylkowski, C., Sanders, J. O., et al. (2006). Function and well-being in ambulatory children with cerebral palsy. Journal of Pediatric Orthopedics, 26(1), 119-124. (Pubitemid 44385824)
26. Mc Manus, V., Corcoran, P., & Perry, I. J. (2008). Participation in everyday activities and quality of life in pre-teenage children living with cerebral palsy in South West Ireland. BMC Pediatrics, 8, 50.
27. Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2011). Relationship between leisure and life quality in children with cerebral palsy. Unpublished manuscript. Presented at the Canadian association of occupational therapists annual meeting, June, 2010.
28. Mandich, A. D., Polatajko, H. J., & Rodger, S. (2003). Rites of passage: Understanding participation of children with developmental coordination disorder. Human Movement Science, 22, 583-595. (Pubitemid 37376592)
29. Shikako-Thomas, K., Lach, L., Majnemer, A., Nimignon, J., Cameron, K., & Shevell M. (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. Quality of Life Research, 18, 825-832.
30. Young, B., Rice, H., Dixon-Woods, M., Colver, A. F., & Parkinson, K. N. (2007). A qualitative study of the health-related quality of life of disabled children. Developmental Medicine and Child Neurology, 49(9), 660-665. (Pubitemid 47316787)
31. Davis, E., Shelly, A., Waters, E., Mackinnon, A., Reddihough, D., Boyd, R., et al. (2009). Quality of life of adolescents with cerebral palsy: Perspectives of adolescents and parents. Developmental Medicine and Child Neurology, 51(3), 193-199.
32. McBurney, H., Taylor, N. F., Dodd, K. J., & Graham, H. K. (2003). A qualitative analysis of the benefits of strength training for young people with cerebral palsy. Developmental Medicine and Child Neurology, 45(10), 658-663. (Pubitemid 37168167)
33. Ronen, G. M., Rosenbaum, P., Law, M., & Streiner, D. L. (1999). Health-related quality of life in childhood epilepsy: The results of children's participation in identifying the components. Developmental Medicine and Child Neurology, 41(8), 554-559. (Pubitemid 29389595)
34. Fraas, M., & Bellerose, A. (2010). Mentoring programme for adolescent survivors of acquired brain injury. Brain Injury, 24(1), 50-61.
35. Becker, E., & Dusing, S. (2010). Participation is possible: A case report of integration into a community performing arts program. Physiotherapy Theory and Practice, 26(4), 275-280.
36. Davis, E., Davies, B., Wolfe, R., Raadsveld, R., Heine, B., Thomason, P., et al. (2009). A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. Developmental Medicine and Child Neurology, 51(2), 111-119.
37. Poulsen, A. A., Ziviani, J. M., Johnson, H., & Cuskelly, M. (2008). Loneliness and life satisfaction of boys with developmental coordination disorder: The impact of leisure participation and perceived freedom in leisure. Human Movement Science, 27(2), 325-343.
38. Groff, D. G., Lundberg, N. R., & Zabriskie, R. B. (2009). Influence of adapted sport on quality of life: Perceptions of athletes with cerebral palsy. Disability and Rehabilitation, 31(4), 318-326.
39. Muller-Godeffroy, E., Michael, T., Poster, M., Seidl, U., Schwarke, D., & Thyen, U. (2008). Self-reported health related quality of life in children and adolescents with myelomelingocele. Developmental Medicine and Child Neurology, 50(6), 456-461. (Pubitemid 351699589)
40. McConachie, H., Colver, A. F., Forsyth, R. J., Jarvis, S. N., & Parkinson, K. N. (2006). Participation of disabled children: How should it be characterised and measured? Disability and Rehabilitation, 28(18), 1157-1164. (Pubitemid 44364098)