Measuring participation of children with disabilities: Issues and challenges

References

• World Health Organization. International classification of functioning, disability and health. WHO, GenevaSwitzerland 2001
   Google Scholar
• Imrie R. Demystifying disability: A review of the International classification of functioning, disability and health. Sociol Health Ill 2004; 26: 287–305
   PubMed Web of Science ®Google Scholar
• Wade D T, Halligan P. Editorial: New wine in old bottles: The WHO ICF as an explanatory model of human behaviour. Clin Rehabil 2003; 17: 349–354
   PubMed Web of Science ®Google Scholar
• Lollar D J, Simeonsson R J. Diagnosis to function: Classification for children and youths. Devel Behav Pediatrics 2005; 26: 323–330
   PubMed Web of Science ®Google Scholar
• Østensjo S, Bjorbaekmo W, Carlberg E B, Vøllestad N K. Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory (PEDI). Disabil Rehabil 2006; 28: 489–504
   PubMed Web of Science ®Google Scholar
• Cierza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). QoL Res 2005; 14: 1225–1237
   PubMed Web of Science ®Google Scholar
• Granlund M, Eriksson L, Yiven R. Utility of the international classification of functioning, disability and health's participation dimension in assigning ICF codes to items from extant rating instruments. J Rehabil Med 2004; 36: 130–137
   PubMed Web of Science ®Google Scholar
• Perenboom R JM, Chorus A MJ. Measuring participation according to the international classification of functioning, disability, and health (ICF). Disabil Rehabil 2003; 25: 577–587
   PubMed Web of Science ®Google Scholar
• McConachie H, Colver A F, Forsyth R J, Jarvis S N, Parkinson K N. Participation of disabled children: How should it be characterised and measured?. Disabil Rehabil 2006; 28: 1157–1164
   PubMed Web of Science ®Google Scholar
• Morris C, Kurinczuk J J, Fitzpatrick R. Child or family assessed measures of activity performance and participation for children with cerebral palsy: A structured review. Child: Care Health Devel 2005; 31: 397–407
   PubMed Web of Science ®Google Scholar
• Lollar D L, Simeonsson R J, Nanda U. Measures of outcomes for children and youth. Arch Phys Med Rehabil 2000; 81(Suppl 2)S46–S52
   PubMed Web of Science ®Google Scholar
• King G, Law M, King S, Hurley P, Rosenbaum P, Hanna S, Kertoy M, Young N. Children's Assessment of Participation and Enjoyment (CAPE) and preferences for activities of children. PsychCorp, San Antonio, TX 2004
   Google Scholar
• Coster W J, Deeney T, Haltiwanger J, Haley S M. School function assessment. PsychCorp, San Antonio, TX 1998
   Google Scholar
• Dunst C J, Hamby D, Trivette C M, Raab M, Bruder M B. Young children's participation in everyday family and community activity. Psychol Rep 2002; 91: 875–897
   PubMed Web of Science ®Google Scholar
• Wilson L L, Mott D W, Batman D. The asset-based context matrix: A tool for assessing children's learning opportunities and participation in natural environments. Top Early Child Spec Educ 2004; 24: 110–120
   Web of Science ®Google Scholar
• Biddle B J. Recent development in role theory. Ann Rev Sociol 1986; 12: 67–92
   Web of Science ®Google Scholar
• Jackson J. Contemporary criticisms of role theory. J Occup Sci 1998; 5: 49–55
   Google Scholar
• Thomas C. The baby and the bath water: Disabled women and motherhood in social context. Sociol Health Ill 1997; 19: 622–643
   Web of Science ®Google Scholar
• Kelly D M, Sikka A, Ventkatesan S. A review of research on parental disability: Implications for research and counseling practice. Rehabil Counsel Bull 1997; 41: 105–121
   Web of Science ®Google Scholar
• Grue L, Laerum K T. ‘Doing motherhood’: Some experiences of mothers with physical disabilities. Disabil Soc 2002; 6: 671–683
   Web of Science ®Google Scholar
• Whiteneck G. Conceptual models of disability: Past, present, and future. Workshop on disability in America: A new look—Summary and background papers, M J Field, A M Jette, L Martin. National Academies Press, Washington, DC 2006; 50–66
   Google Scholar
• Gallimore R, Weisner T S, Kaufman S Z, Bernheimer L P. The social construction of ecocultural niches: Family accommodation of developmentally delayed children. Am J Mental Retard 1989; 94: 216–230
   PubMedGoogle Scholar
• Forsyth R, Jarvis S. Editorial: Participation in childhood. Child: Care Health Dev 2002; 28: 277–279
   PubMed Web of Science ®Google Scholar
• Colver A. A shared framework and language for childhood disability. Dev Med Child Neurol 2005; 47: 780–784
   PubMed Web of Science ®Google Scholar
• Clapton J, Kendall E. Autonomy and participation in rehabilitation: Time for a new paradigm?. Disabil Rehabil 2002; 24: 987–991
   Web of Science ®Google Scholar
• Ueda S, Okawa Y. The subjective dimension of functioning and disability: What is it and what is it for?. Disabil Rehabil 2003; 25: 596–601
   PubMed Web of Science ®Google Scholar
• Hemmingson H, Jonsson H. The issue is—An occupational perspective on the concept of participation in the International classification of functioning, disability, and health—Some critical remarks. Am J Occup Ther 2005; 59: 569–576
   PubMed Web of Science ®Google Scholar
• Whiteneck G, Heinemann A, Corrigan J, Bogner J, Brooks C A. The Community Participation Index: A measure based on constituency input and evaluated in rehabilitation client and general population surveys. Paper presented at Symposium on Post-acute Care Rehabilitation, Crystal City, VA, February, 122007
   Google Scholar
• Dijkers M PJM, Whiteneck G, El-Jaroudi R. Measures of social outcomes in disability research. Arch Phys Med Rehabil 2000; 81(Suppl 2)S63–S80
   PubMed Web of Science ®Google Scholar
• Hammal D, Jarvis S N, Colver A F. Participation of children with cerebral palsy is influenced by where they live. Dev Med Child Neurol 2004; 46: 292–298
   PubMed Web of Science ®Google Scholar
• Simeonsson R J, Carlson D, Huntington G S, McMillen J S, Brent J L. Students with disabilities: A national survey of participation in school activities. Disabil Rehabil 2001; 23: 49–63
   PubMed Web of Science ®Google Scholar
• Blanchard L T, Gurka M J, Blackman J A. Emotional, developmental, and behavioral health of American children and their families: A report from the 2003 National Survey of Children's Health. Pediatrics 2006; 117: e1202–e1212
   PubMed Web of Science ®Google Scholar
• Florian L, Hollenweger J, Simeonsson R J, Wedell K, Riddell S, Terzi L, Holland A. Cross-cultural perspectives on the classification of children with disabilities: Part 1. Issues in the classification of children with disabilities. J Spec Educ 2006; 40: 36–45
   Web of Science ®Google Scholar
• Lepage C, Noreau L, Bernard P -M, Fougeyrollas P. Profile of handicap situations in children with cerebral palsy. Scan J Rehabil Med 1998; 30: 263–272
   PubMedGoogle Scholar
• Young N L, Yoshida K K, Williams J I, Bombardier C, Wright J G. The role of children in reporting their physical disability. Arch Phys Med Rehabil 1995; 76: 913–918
   PubMed Web of Science ®Google Scholar
• Young N K, Williams J I, Yoshida K K, Wright J G. Measurement properties of the Activities Scale for Kids. J Clin Epidemiol 2000; 53: 125–137
   PubMed Web of Science ®Google Scholar
• Mihaylov S, Jarvis S N, Colver A F, Beresford B. Identification and description of environmental factors that influence participation of children with cerebral palsy. Dev Med Child Neurol 2004; 46: 299–304
   PubMed Web of Science ®Google Scholar
• Bastiaansen D, Koot H M, Ferdinand R F, Verhulst F C. Quality of life in children with psychiatric disorders: self-, parent, and clinician report. J Am Acad Child Adoles Psych 2004; 43: 221–230
   PubMed Web of Science ®Google Scholar
• Varni J W, Burwinkle T. The Peds QL™ as a patient-reported outcome in children and adolescents with Attention-Deficit/Hyperactivity Disorder: A population-based study. Health QoL Outcomes 2006; 4: 26
   PubMed Web of Science ®Google Scholar
• Sawyer M G, Whaites L, Rey J M, Hazell P L, Graetz B W, Baghurst P. Health-related quality of life of children and adolescents with mental disorders. J Am Acad Child Adoles Psych 2002; 41: 530–537
   PubMed Web of Science ®Google Scholar
• Haley S M, Siebens H, Coster W J, Tao W, Black-Shaffer R M, Gandek B, Sinclair S J, Ni P. Computerized adaptive testing for follow-up after discharge from inpatient rehabilitation: I. Activity outcomes. Arch Phys Med Rehabil 2006; 87: 1033–1042
   PubMed Web of Science ®Google Scholar
• Haley S M, Raczek A E, Coster W J, Dumas H M, Fragala-Pinkham M A. Assessing mobility in children using a computer adaptive testing version of the Pediatric Evaluation of Disability Inventory. Arch Phys Med Rehabil 2005; 86: 932–939
   PubMed Web of Science ®Google Scholar