Triangulated Proxy Reporting: a technique for improving how communication partners come to know people with severe cognitive impairment

References

• Petitpierre G, Wolf D, Dietrich A, et al. Integration of education and care given to children with profound multiple disabilities in Switzerland. J Pol Pract Intel Disabil. 2007;4:11–22.
   Google Scholar
• Schalock RL. Moving from a quality of care to quality of life program emphasis. International Congress about Quality of Life of Persons with Disability; 17–21 Oct. 2005; Quito, Ecudor.
   Google Scholar
• Lyons GS. Quality of life for persons with intellectual disabilities: a review of the literature. In: Kober R, editor. Enhancing quality of life of people with intellectual disabilities. New York: Springer; 2010. p. 73–125.
   Google Scholar
• Blain-Moraes S, Chau T. Challenges of developing communicative interaction in individuals with congenital profound intellectual and multiple disabilities. J Intel Devel Disabil. 2012;1–12. Early online.
   Web of Science ®Google Scholar
• Money D. Satisfaction for all: a framework for assessing life satisfaction for all people with learning disabilities. Brit J Learn Disabil. 1999;27:52–57.
   Google Scholar
• Stancliffe R, Jones E, Mansell J, et al. Active Support: a critical review and commentary. J Intellect Dev Disabil. 2008;33:196–214.
   PubMed Web of Science ®Google Scholar
• Harmer BJ, Orrell M. What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging Ment Health. 2008;12:548–558.
   PubMed Web of Science ®Google Scholar
• Forster S, Iacono T. Disability support workers' experience of interaction with a person with profound intellectual disability. J Intellect Dev Disabil. 2008;33:137–147.
   PubMed Web of Science ®Google Scholar
• Perkins EA. Self- and proxy reports across three populations: older adults, persons with Alzheimer’s Disease, and persons with intellectual disabilities. J Pol and Prac Intel Disabil. 2007;4:1–10.
   Google Scholar
• Goldbart J, Caton S. Communication and people with the most complex needs: what works and why this is essential. London, UK: MENCAP; 2010.
   Google Scholar
• Martin A, O’Connor-Fenelon M, Lyons R. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature. J Intellect Disabil. 2010;14:303–314.
   PubMedGoogle Scholar
• IASSID. PMG SIRG Mission Statement: International Association for the Scientific Study of Intellectual Disability; 2011. [cited 2015 Nov 4]. Available from: http://www.iassid.org/sirgs/profound-multiple-disabilities.
   Google Scholar
• Alzheimer’s Society. The later stages of dementia. 2013. [cited 2015 Nov 4]. Available from: http://www.alzheimers.org.uk.
   Google Scholar
• Turner-Stokes L, Nair A, Sedki I, et al. Multidisciplinary rehabilitation for acquired brain injury in adults of working age. London, UK: The Cochrane Collaboration; 2011.
   Google Scholar
• Dennis M. Theory of mind in children with traumatic brain injury. J Int Neuropsych Soc. 2012;19:1–9.
   PubMed Web of Science ®Google Scholar
• Nakken H, Vlaskamp CA. A need for a taxonomy for profound intellectual and multiple disabilities. J Pol Prac Intel Disabil. 2007;4:83–87.
   Google Scholar
• Buntix WHE, Schalock RL. Models of disability, quality of life and individualized supports: implications for professional practice in intellectual disability. J Pol Prac Intel Disabil. 2010;7:283–294.
   Web of Science ®Google Scholar
• World Health Organization & Alzheimer’s Disease International. Dementia: a public health priority. 2012. [cited 2015 Nov 4]. Available from: http://www.who.int/mental_health/publications/dementia
   Google Scholar
• Adams D, Oliver C. The expression and assessment of emotions and internal states in individuals with severe or profound intellectual disabilities. Clin Psychol Rev. 2011;31:293–306.
   PubMed Web of Science ®Google Scholar
• Andresen S, Diehm I, Sander U, et al. Children and the good life: new challenges for research on children. London, UK: Springer; 2011.
   Google Scholar
• Vos P, De Cock P, Petry K, et al. What makes them feel like they do? Investigating the subjective well-being in people with severe and profound disabilities. Res Dev Disabil. 2010;31:1623–1632.
   PubMed Web of Science ®Google Scholar
• Joyce T. Best interests: guidance on determining the best interests of adults who lack the capacity to make a decision (or decisions) for themselves. London, UK: The British Psychological Society; 2007.
   Google Scholar
• Williams RW, Roberts GW, Irvine FE, et al. Exploring decision making in intellectual disability nursing practice: a qualitative study. J Intel Disabil. 2010;14:197–209.
   PubMedGoogle Scholar
• Claes C, Van Hove G, Van Loon J, et al. Relationship between self-report and proxy ratings on assessed quality of life-related outcomes. J Pol Prac Intel Disabil. 2012;3:159–165.
   Web of Science ®Google Scholar
• Schmidt S. Self and proxy rating of quality of life in adults with intellectual disabilities: results from the DISQOL study. Res Dev Disabil. 2010;31:1015–1026.
   PubMed Web of Science ®Google Scholar
• Lyons GS, Arthur-Kelly M, Walla P. Towards improved ways of knowing children with profound multiple disabilities: introducing Startle reflex modulation. Devel Neurorehab. 2013;16:340–344.
   PubMed Web of Science ®Google Scholar
• Ellis M, Astell A. Intensive Interaction for people with dementia: A new approach to communication? The Intensive Interaction Newsletter 2011; Spring:5-6.
   Google Scholar
• Watson J. People leading lives they prefer through supported decision making: listening to those rarely heard. SCOPE Conference: Communicate, Participate, Enjoy! 22–24 March 2011; Melbourne, Australia.
   Google Scholar
• Lyons GS, Arthur-Kelly M, Eidels A, et al. Deep Assessment: a novel framework for improving the care of people with very advanced Alzheimer’s Disease. BioMed Res Int. 2015;2015. doi: 10.1155/2015/749451.
   Google Scholar
• Lyons GS. Go ahead… Make my day! The SLD Experience 2003;Summer:22–6.
   Google Scholar
• Clegg J. The ideal proxy informant. IASSID Inaugural European Quadrennial Conference, 12-15 June 2002; Dublin, Ireland.
   Google Scholar
• Petry K, Maes B, Vlaskamp C. Operationalizing quality of life for people with profound multiple disabilities: a Delphi study. J Intellect Disabil Res. 2007;51:334–349.
   PubMed Web of Science ®Google Scholar
• Forster S. Affect attunement in communicative interactions between adults with profound intellectual and multiple disabilities and support workers [PhD]. Australia: Monash University; 2011.
   Google Scholar
• Sigafoos J. Inventory of Potential Communicative Acts (IPCA). In: Sigafoos J, Arthur-Kelly M, Butterfield N, editors. Enhancing everyday communication for children with disabilities. Baltimore, MD: Brookes; 2006. p. 1371–53.
   Google Scholar
• Lyons GS. Life satisfaction for children with profound and multiple disabilities: seeking eudaemonia [PhD]. Australia: University of Newcastle; 2003.
   Google Scholar
• Alberto P, Troutman A. Applied behaviour analysis for teachers, 9th ed. Upper Saddle River, NJ: Pearson; 2013.
   Google Scholar
• Denzin NK, Lincoln YS. The Sage handbook of qualitative research. Thousand Oaks, CA: Sage; 2005.
   Google Scholar
• Rothbauer P. Triangulation. In: Given L, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks, CA: Sage; 2008. p. 893–895.
   Google Scholar
• Money D. Client Satisfaction Survey: a framework for addressing the life satisfaction of people who have learning difficulties. England: Nottinghamshire Healthcare NHS Trust; 2002.
   Google Scholar
• Money D. Staff communication with service users: What, how and why do staff communicate and how can this be facilitated. IASSID Inaugural European Conference, 12 June 2002, Dublin Ireland.
   Google Scholar
• De Bortoli T, Balandin S, Foreman P, et al. Mainstream teachers’ experiences of communicating with students with multiple and severe disabilities. Educ Train Autism Devel Disabil. 2012;47:236–252.
   Web of Science ®Google Scholar
• De Bortoli T, Arthur-Kelly M, Mathisen B, et al. Speech-language pathologists’ perceptions of implementing communication intervention with students with multiple and severe disabilities. Aug Alt Commun. 2014;30:55–70.
   PubMed Web of Science ®Google Scholar
• De Bortoli T, Arthur-Kelly M, Foreman P, et al. Complex contextual influences on the communicative interactions of students with multiple and severe disabilities. Int J Speech-Lang Path. 2011;13:422–435.
   PubMed Web of Science ®Google Scholar
• Brown F, Gothelf CR, Guess D, et al. Self-determination for individuals with the most severe disabilities: moving beyond chimera. J Ass Persons Severe Handicaps. 1998;23:17–26.
   Web of Science ®Google Scholar