1,175
Views
19
CrossRef citations to date
0
Altmetric
Research Papers

Parents’ perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope

, , , &
Pages 2113-2122 | Received 02 Jul 2012, Accepted 22 Jan 2013, Published online: 25 Apr 2013

References

  • WHO. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403–9
  • Livingston MH, Rosenbaum P, Russel DJ, Palisano RJ. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol 2007;49:516–21
  • Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999;48:977–88
  • Rosenbaum P, Paneth N, Leviton A, et al. The definition and classification of cerebral palsy. Dev Med Child Neurol Suppl 2007;49:8–14
  • Stanley F, Blair E, Alberman E. Cerebral palsies: epidemiology and causal pathways. London: Cambridge University Press; 2000:251
  • Majnemer A, Mazer B. New directions in the outcome evaluation of children with cerebral palsy. Sem Ped Neuro 2004;11:11–17
  • Shevell MI, Bodensteiner JB. Cerebral palsy: defining the problem. Semin Pediatr Neurol 2004;11:2–4
  • Schalock RL. The concept of quality of life: what we know and do not know. J Intellect Disabil Res 2004;48:203–16
  • 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 2009;18:825–32
  • Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London; Thousand Oaks (CA): Sage Publications; 2002
  • Russell DJ, Rosenbaum PL, Avery LM, Lane M. Gross Motor Function Measure (GMFM-66 and GMFM-88) user’s manual. London, UK: MacKeith Press; 2002
  • Majnemer A, Shevell M, Law M, et al. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008;17:1163--71
  • Gates P, Otsuka N, Sanders J, McGee-Brown J. Functioning and health-related quality of life of adolescents with cerebral palsy: self versus parent perspectives. Dev Med Child Neurol 2010;52:843–9
  • Poston DJ, Turnbull AP. Role of spirituality and religion in family quality of life for families of children with disabilities. Educ Train Dev Disabil 2004;39:95–108
  • Sawyer MG, Bittman MLA Greca AM, et al. Time demands of caring for children with cerebral palsy: what are the implications for maternal mental health? Dev Med Child Neurol 2011;53:338–43
  • Resch JA, Mireles G, Benz MR, et al. Giving parents a voice: a qualitative study of the challenges experienced by parents of children with disabilities. Rehabil Psychol 2010;55:139–50
  • Kirpalani HM, Parkin PC, Willan AR, et al. Quality of life in spina bifida: importance of parental hope. Arch Dis Child 2000;83:293–7
  • Lloyd TJ, Hastings R. Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities. J Intellect Disabil Res 2009;53:957–68
  • Horton TV, Wallander JL. Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabil Psychol 2001;46:382–99
  • Neely-Barnes S, Marcenko M, Weber L. Does choice influence quality of life for people with mild intellectual disabilities? Intellect Dev Disabil 2008;46:12–26
  • Majnemer A, Shikako-Thomas K, Lach L, et al. Rehabilitation service utilization in children and youth with cerebral palsy. Child Care Health Dev [Epub ahead of print]. DOI: 10.1111/cch.12026

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.