Inclusion of children with disabilities in mainstream child development research

References

• Beail, N. 2010. “The challenge of the randomized control trial to psychotherapy research with people who have learning disabilities.” Advances in Mental Health and Learning Disabilities 4: 37–41.
   Google Scholar
• Beresford, B., R. Tozer, P. Rabiee, and P. Sloper. 2004. “Developing an approach to involving children with autistic spectrum disorders in a social care research project.” British Journal of Learning Disabilities 32: 180–185.
   Google Scholar
• Boyle, C.A., S. Boulet, L.A. Schieve, R.A. Cohen, S.J. Blumberg, M. Yeargin-Allsopp, S. Visser, and M.D. Kogan. 2011. Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics 127: 1034–1042.doi:10.1542/peds.2010-2989.
   Google Scholar
• Center for Applied Special Technology. 2011. Universal design for learning guidelines version 2.0. Wakefield, MA: Center for Applied Special Technology.
   Google Scholar
• Charlton, J. 1998. Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.
   Google Scholar
• Clavering, E. K., and J. McLaughlin. 2010. “Children’s participation in health research: From objects to agents?” Child Care, Health and Development 36: 603–611.
   PubMed Web of Science ®Google Scholar
• Cleaver, S., H. Ouellette-Kuntz, and A. Sakar. 2010. “Participation in intellectual disability research: A review of 20 years of studies.” Journal of Intellectual Disability Research 54: 187–193.
   PubMed Web of Science ®Google Scholar
• Connor, C. M., S. B. Piasta, B. Fishman, S. Glasney, C. Schatschneider, E. Crowe, P. Underwood, and F. J. Morrison. 2009. “Individualizing student instruction precisely: Effects of child × instruction interactions on first graders’ literacy development.” Child Development 80: 77–100.
   PubMed Web of Science ®Google Scholar
• Dye, L., D. J. Hare, and S. Hendy. 2007. “Capacity of people with intellectual disabilities to consent to take part in a research study.” Journal of Applied Research in Intellectual Disabilities 20: 168–174.
   Web of Science ®Google Scholar
• Feldman, M.A., F. Owen, A.E. Andrews, J.P Hamelin, R. Barber, and D. Griffiths. 2012. Health self-advocacy training for persons with intellectual disabilities. Journal of Intellectual Disability Research. 56, Part II: 1110–21.doi:10.1111/j.1365-2788.2012.01626.x.
   Google Scholar
• Garth, B., and R. Aroni. 2003. “‘I value what you have to say’. Seeking the perspective of children with a disability, not just their parents.” Disability and Society 18: 561–576.
   Web of Science ®Google Scholar
• Gordon, D. T., J. W. Gravel, and L. A. Schifter, eds. 2009. A policy reader in universal design for learning. Cambridge, MA: Harvard Education Press.
   Google Scholar
• Gray, C., and S. Carville. 2008. “Ethical research practices across disciplinary boundaries: The process of research involving children with a visual impairment.” Child Care in Practice 14: 217–228.
   Google Scholar
• Guerra, N. G., S. Graham, and P. H. Tolan. 2011. “Raising healthy children: Translating child development research into practice.” Child development 82: 7–16.
   PubMed Web of Science ®Google Scholar
• Guttmacher, A.E. 2011. A vision for the future of child development research. Invited Address presented at the biannual meeting of the Society for Research in Child Development, April 1, in Montreal, Canada.
   Google Scholar
• Iacono, T. 2006. “Ethical challenges and complexities of including people with intellectual disability as participants in research.” Journal of Intellectual and Developmental Disability 31: 173–179.
   PubMed Web of Science ®Google Scholar
• Iacono, T., and V. Murray. 2003. “Issues of informed consent in conducting medical research involving people with intellectual disability.” Journal of Applied Research in Intellectual Disabilities 16: 41–51.
   Web of Science ®Google Scholar
• Interagency Secretariat on Research Ethics (Canada). 2009. Tri-council policy statement: Ethical conduct for research involving humans (TCPS). TCPS revised draft 2nd ed. http://www.pre.ethics.gc.ca/pdf/eng/RevisedDraft2ndEdPDFs/RevisedDraft2ndEditionTCPS_EN.pdf (accessed May 2, 2012).
   Google Scholar
• Lai, R., D. Elliott, and H. Ouellette-Kuntz. 2006. “Attitudes of research ethics committee members toward individuals with intellectual disabilities: The need for more research.” Journal of Policy and Practice in Intellectual Disabilities 3: 114–118.
   Google Scholar
• Lewis, A., and J. Porter. 2004. “Interviewing children and young people with learning disabilities: Guidelines for researchers and multi-professional practice.” British Journal of Learning Disabilities 32: 191–197.
   Google Scholar
• Loveridge, J. 2010. Involving children and young people in research in educational settings. Wellington, New Zealand: Victoria University of Wellington, Jessie Hetherington Centre for Educational Research.
   Google Scholar
• Lundy, L., L. McEvoy, and B. Byrne. 2011. “Working with young children as co-researchers: An approach informed by the United Nations Convention on the Rights of the Child.” Early Education and Development 22: 714–736.
   Web of Science ®Google Scholar
• Mactavish, J., M. Mahon, and L. Lutfiyya. 2000. “‘I can speak for myself’: Involving individuals with intellectual disabilities as research participants.” Mental Retardation 38: 216–227.
   PubMedGoogle Scholar
• McDonald, K. E. 2012. “‘We want respect’: Adults with intellectual and developmental disabilities address respect in research.” American Journal on Intellectual and Developmental Disabilities 117: 263–274.
   PubMedGoogle Scholar
• McGrew, K. S., M. L. Thurlow, and A. N. Spiegel. 1993. “An investigation of the exclusion of students with disabilities in national data collection programs.” Educational Evaluation and Policy Analysis 15: 339–352.
   Web of Science ®Google Scholar
• McVilly, K. R., and A. J. Dalton. 2006. “Commentary on Iacono (2006): ‘Ethical challenges and complexities of including people with intellectual disability as participants in research’.” Journal of Intellectual & Developmental Disability 31: 186–188.
   Web of Science ®Google Scholar
• National Center on Universal Design for Learning. 2011. http://www.udlcenter.org (accessed May 2, 2012)
   Google Scholar
• National Institutes of Health. 1998. NIH policy and guidelines on the inclusion of children as participants in research involving human subjects. http://grants.nih.gov/grants/guide/notice-files/not98-024.html (accessed May 2, 2012)
   Google Scholar
• National Institutes of Health. 2001. NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research – Amended, October, 2001. http://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm (accessed May 2, 2012).
   Google Scholar
• Office of the United Nations High Commissioner for Human Rights. 1989. United Nations Convention on the Rights of the Child. http://www2.ohchr.org/english/law/pdf/crc.pdf (accessed March 26, 2012).
   Google Scholar
• Office of the United Nations High Commissioner for Human Rights. 2006. United Nations Convention on the Rights of Persons with Disabilities. http://www2.ohchr.org/english/law/pdf/disabilities-convention.pdf (accessed March 26, 2012).
   Google Scholar
• Singh, A., J. Matson, C. Cooper, D. Dixon, and P. Sturmey. 2005. “The use of risperidone among individuals with mental retardation: Clinically supported or not?” Research in Developmental Disabilities 26: 203–218.
   PubMed Web of Science ®Google Scholar
• Snelgrove, S. 2005. Bad, mad and sad: Developing a methodology of inclusion and a pedagogy for researching students with intellectual disabilities. International Journal of Inclusive Education 9: 313–29.
   Google Scholar
• United States Congress. 2008. Americans with Disabilities Act of 1990, as amended. http://www.ada.gov/pubs/adastatute08.pdf (accessed May 2, 2012).
   Google Scholar
• Watamura, S. E., D. A. Phillips, T. W. Morrissey, K. McCartney, and K. Bub. 2011. “Double jeopardy: Poorer social–emotional outcomes for children in the NICHD SECCYD experiencing home and child-care environments that confer risk.” Child Development 82: 48–65.
   PubMed Web of Science ®Google Scholar
• World Health Organization. 2001. The international classification of functioning, disability and health (ICF). Geneva, Switzerland: World Health Organization.
   Google Scholar
• World Health Organization. 2002. Towards a common language for functioning, disability and health: ICF. The international classification of functioning, disability and health. Geneva, Switzerland: World Health Organization.
   Google Scholar
• Yan, E. G., and K. M. Munir. 2004. “Regulatory and ethical principles in research involving children and individuals with developmental disabilities.” Ethics and Behavior 14: 31–49.
   PubMed Web of Science ®Google Scholar
• Zulman, D.M., J.B. Sussman, X. Chen, C.T. Cigolle, C.S. Blaum, and R.A. Hayward. 2011. Examining the evidence: A systematic review of the inclusion and analysis of older adults in randomized controlled trials. Journal of General Internal Medicine 26: 783–790.doi:10.1007/s11606-010-1629-x.
   Google Scholar