A call for dysphagia-related safety incident research in people with developmental disabilities

References

• Access Economics. (2008). The economic impact of cerebral palsy in Australia in 2007. Retrieved from http://www.cpresearch.org.au/pdfs/access_economics_report.pdf
   Google Scholar
• Australian Bureau of Statistics. (2013). Disability, ageing and carers, Australia: Summary of findings, 2012 (cat. no. 4430.0). Retrieved from http://www.abs.gov.au/ausstats/[email protected]/mf/4430.0
   Google Scholar
• Australian Commission on Safety and Quality in Health Care. (2011). Windows into safety and quality in health care 2011. Sydney: Author. Retrieved from http://www.safetyandquality.gov.au/publications/windows-into-safety-and-quality-in-health-care-2011/
   Google Scholar
• Balandin, S., Hemsley, B., Hanley, L., & Sheppard, J. J. (2009). Understanding mealtime changes for adults with cerebral palsy and the implications for support services. Journal of Intellectual & Developmental Disability, 34, 197–206. doi:10.1080/13668250903074489
   PubMed Web of Science ®Google Scholar
• Ball, S. L., Panter, S. G., Redley, M., Proctor, C.-A., Byrne, K., Clare, I. C. H., & Holland, A. J. (2012). The extent and nature of need for mealtime support among adults with intellectual disabilities. Journal of Intellectual Disability Research, 56, 382–401. doi:10.1111/j.1365-2788.2011.01488.x
   PubMed Web of Science ®Google Scholar
• Balzer, K. M. (2000). Drug-induced dysphagia. International Journal of MS Care, 2(1), 40–50. doi:10.7224/1537-2073-2.1.40.
   Google Scholar
• Benfer, K. A., Weir, K. A., Bell, K. L., Ware, R. S., Davies, P. S. W., & Boyd, R. N. (2013). Oropharyngeal dysphagia and gross motor skills in children with cerebral palsy. Pediatrics, 131, e1553–e1562. doi:10.1542/peds.2012-3093
   PubMed Web of Science ®Google Scholar
• Brickell, T. A., Nicholls, T. L., Procyshyn, R. M., McLean, C., Dempster, R. J., Lavoie, J. A. A., … Wang, E. (2009). Patient safety in mental health. Edmonton, Canada. Canadian Patient Safety Institute and Ontario Hospital Association. Retrieved from http://www.patientsafetyinstitute.ca/english/research/commissionedresearch/mentalhealthandpatientsafety/documents/mental%20health%20paper.pdf
   Google Scholar
• Chadwick, D. D., Jolliffe, J., Goldbart, J., & Burton, M. H. (2006). Barriers to caregiver compliance with eating and drinking recommendations for adults with intellectual disabilities and dysphagia. Journal of Applied Research in Intellectual Disabilities, 19, 153–162. doi:10.1111/j.1468-3148.2005.00250.x
   Web of Science ®Google Scholar
• Crawford, H. (2009). Dysphagia and people with profound intellectual and multiple disabilities. In J. Pawlyn & S. Carnaby (Eds.), Profound intellectual and multiple disabilities: Nursing complex needs (pp. 236–258). Chichester, UK: Wiley-Blackwell.
   Google Scholar
• Fink, J. C., Brown, J., Hsu, V. D., Seliger, S. L., Walker, L., & Zhan, M. (2009). CKD as an underrecognized threat to patient safety. American Journal of Kidney Diseases, 53, 681–688. doi:10.1053/j.ajkd.2008.12.016
   PubMed Web of Science ®Google Scholar
• Hemsley, B., Balandin, S., & Sheppard, J. J. (2014). Dysphagia-related safety for adults with developmental disabilities: Restrictions, risk and complacency [Abstract]. Journal of Applied Research in Intellectual Disabilities, 27, 314. doi:10.1111/jar.12107
   Web of Science ®Google Scholar
• Hemsley, B., Balandin, S., & Togher, L. (2007). Older unpaid carers’ experiences supporting adults with cerebral palsy and complex communication needs in hospital. Journal of Developmental and Physical Disabilities, 19, 115–124. doi:10.1007/s10882-007-9040-1
   Web of Science ®Google Scholar
• Hemsley, B., Balandin, S., & Togher, L. (2008). ‘We need to be the centerpiece’: Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital. Disability and Rehabilitation, 30, 1759–1771. doi:10.1080/09638280701645474
   PubMed Web of Science ®Google Scholar
• Hemsley, B., Balandin, S., & Worrall, L. (2011). Nursing the patient with developmental disability in hospital: Roles of paid carers. Qualitative Health Research, 21, 1632–1642. doi:10.1177/1049732311415289
   PubMed Web of Science ®Google Scholar
• Hemsley, B., Balandin, S., & Worrall, L. (2012). Nursing the patient with complex communication needs: Time as a barrier and a facilitator to successful communication in hospital. Journal of Advanced Nursing, 68, 116–126. doi:10.1111/j.1365-2648.2011.05722.x
   PubMed Web of Science ®Google Scholar
• Hemsley, B., & Durvasula, S. (2012). Dysphagia. In Therapeutic Guidelines Limited (Ed.), Management guidelines: Developmental disability: Version 3 (pp. 187–193). Melbourne, Australia: Therapeutic Guidelines Limited. Retrieved from http://www.tg.org.au/?sectionid=93
   Google Scholar
• Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD): Final report. Retrieved from http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
   Google Scholar
• Hill, S. (Ed.). (2011). The knowledgeable patient: Communication and participation in health: A Cochrane handbook. Chichester, UK: Wiley-Blackwell. doi:10.1002/9781444346855
   Google Scholar
• Hollins, S., Attard, M. T., von Fraunhofer, N., McGuigan, S., & Sedgwick, P. (1998). Mortality in people with learning disability: Risks, causes, and death certification findings in London. Developmental Medicine & Child Neurology, 40, 50–56. doi:10.1111/j.1469-8749.1998.tb15356.x
   PubMed Web of Science ®Google Scholar
• Hollins, S., & Tuffrey-Wijne, I. (2013). Meeting the needs of patients with learning disabilities [Editorial]. BMJ, 346, f3421. doi:10.1136/bmj.f3421
   Google Scholar
• Kennedy, M., McCombie, L., Dawes, P., McConnell, K. N., & Dunnigan, M. G. (1997). Nutritional support for patients with intellectual disability and nutrition/dysphagia disorders in community care. Journal of Intellectual Disability Research, 41, 430–436. doi:10.1111/j.1365-2788.1997.tb00731.x
   PubMed Web of Science ®Google Scholar
• von Konigsmark, M., Stewart, L., Kaatzke-McDonald, M., Govey, T., Dennis, J., & Williams, J. (2003). Nutrition in practice manual. Retrieved from https://www.adhc.nsw.gov.au/__data/assets/file/0019/228124/Nutrition_Practice_Manual_July2012.pdf
   Google Scholar
• Leslie, P., Crawford, H., & Wilkinson, H. (2009). People with a learning disability and dysphagia: A Cinderella population? [Letter to the editor]. Dysphagia, 24, 103–104. doi:10.1007/s00455-008-9153-4
   PubMed Web of Science ®Google Scholar
• Logemann, J. A. (1998). Evaluation and treatment of swallowing disorders. Austin, TX: Pro-Ed.
   Google Scholar
• Morad, M., Kandel, I., Ahn, J., Fuchs, B. S., & Merrick, J. (2008). Trends in pediatric mortality from food choking in children with intellectual disability during 1991–2005. International Journal of Adolescent Medicine and Health, 20, 547–551. doi:10.1515/IJAMH.2008.20.4.547
   PubMedGoogle Scholar
• Morad, M., Kandel, I., & Merrick, J. (2009). Residential care centers for persons with intellectual disability in Israel: Trends in mortality from food choking during 1991–2004. Medical Science Monitor, 15, PH75–77.
   PubMed Web of Science ®Google Scholar
• NSW Government Department of Family and Community Services. (2012). Nutrition and swallowing: Policy and procedures. Retrieved from https://www.adhc.nsw.gov.au/__data/assets/file/0015/228120/Nutrition_and_swallowing_policy_and_procedures_Apr_2012.pdf
   Google Scholar
• NSW Ombudsman. (2013). Report of reviewable deaths in 2010 and 2011: Volume 2: Deaths of people with disabilities in care. Retrieved from http://www.ombo.nsw.gov.au/news-and-publications/publications/annual-reports/reviewable-deaths-vol-1/report-of-reviewable-deaths-in-2010-and-2011-volume-2-deaths-of-people-with-disabilities-in-care
   Google Scholar
• Olsen, S., Neale, G., Schwab, K., Psaila, B., Patel, T., Chapman, E. J., & Vincent, C. (2007). Hospital staff should use more than one method to detect adverse events and potential adverse events: Incident reporting, pharmacist surveillance and local real-time record review may all have a place. Quality & Safety in Health Care, 16, 40–44. doi:10.1136/qshc.2005.017616
   PubMed Web of Science ®Google Scholar
• O'Neill, A. C., & Richter, G. T. (2013). Pharyngeal dysphagia in children with Down syndrome. Otolaryngology—Head and Neck Surgery, 149, 146–150. doi:10.1177/0194599813483445
   PubMed Web of Science ®Google Scholar
• Runciman, W. B., Baker, G. R., Michel, P., Jauregui, I. L., Lilford, R. J., Andermann, A., … Weeks, W. B. (2008). The epistemology of patient safety research. International Journal of Evidence-Based Healthcare, 6, 476–486.
   PubMedGoogle Scholar
• Scottish Government. (2013). The keys to life: Improving quality of life for people with learning disabilities. Retrieved from http://www.scotland.gov.uk/Publications/2013/06/1123
   Google Scholar
• Sheppard, J. J. (1995). Clinical evaluation and treatment. In S. R. Rosenthal, J. J. Sheppard, & M. Lotze (Eds.), Dysphagia and the child with developmental disabilities: Medical, clinical, and family interventions (pp. 37–75). San Diego: Singular Publishing Group.
   Google Scholar
• Sheppard, J. J. (2006). Developmental disability and swallowing disorders in adults. In J. Cichero & B. Murdoch (Eds.), Dysphagia: Foundation, theory and practice (pp. 299–318). Chichester, England: Wiley.
   Google Scholar
• Sheppard, J. J. (2010). Foreign body ingestion (FBI). In H. N. Jones & J. C. Rosenbek (Eds.), Dysphagia in rare conditions: An encyclopedia (pp. 219–226). Brisbane, Australia: Plural.
   Google Scholar
• Sheppard, J. J. (2013). Dysphagia Disorder Survey – Revised. Sydney, Australia: Centre for Disability Studies.
   Google Scholar
• Sheppard, J. J., Hochman, R., & Baer, C. (2014). The Dysphagia Disorder Survey: Validation of an assessment for swallowing and feeding function in developmental disability. Research in Developmental Disabilities, 35, 929–942. doi:10.1016/j.ridd.2014.02.017
   PubMed Web of Science ®Google Scholar
• Strauss, D., Ojdana, K., Shavelle, R., & Rosenbloom, L. (2004). Decline in function and life expectancy of older persons with cerebral palsy. NeuroRehabilitation, 19, 69–78.
   PubMed Web of Science ®Google Scholar
• UK Government Department of Health. (2013). Government response to the Confidential Inquiry into premature deaths of people with learning disabilities. Retrieved from http://www.bris.ac.uk/cipold/governmentresponsefull.pdf
   Google Scholar
• Wakefield, J. G., & Jorm, C. M. (2009). Patient safety: A balanced measurement framework. Australian Health Review, 33, 382–389. doi:10.1071/AH090382
   PubMed Web of Science ®Google Scholar
• World Alliance for Patient Safety Drafting Group. (2009). Towards an international classification for patient safety: The conceptual framework. International Journal for Quality Health Care, 21, 2–8. doi:10.1093/intqhc/mzn054
   PubMed Web of Science ®Google Scholar
• World Health Organization (WHO). (2009). More than words: Conceptual framework for the international classification for patient safety: Version 1.1 (Final Technical Report). Retrieved from http://www.who.int/patientsafety/taxonomy/icps_full_report.pdf
   Google Scholar