Being practically, professionally and personally prepared: Supporting people with intellectual disability and dysphagia to eat and drink outside the home

References

• Ahern, K.J. (1999). Ten tips for reflexive bracketing. Qualitative Health Research, 9, 407–411. doi:10.1177/104973239900900309
   Web of Science ®Google Scholar
• Anderson, S., & Bigby, C. (2017). Self-advocacy as a means to positive identities for people with intellectual disability: ‘We Just Help Them, Be Them Really’. Journal of Applied Research in Intellectual Disability, 30, 109–120. doi:10.1111/jar.12223
   PubMed Web of Science ®Google Scholar
• Baker, V., Oldnall, L., Birkett, E., McCluskey, G., & Morris, J. (2010). Adults with learning disabilities (ALD). In Royal college of speech and language therapists position paper. RCSLT: London.
   Google Scholar
• Ball, S., Panter, S., Redley, M., Proctor, C., Byrne, K., Clare, I., & Holland, A. (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
• Bigby, C., & Wiesel, I. (2011). Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation. Journal of Intellectual and Developmental Disability, 36, 263–267. doi:10.3109/13668250.2011.619166
   Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Bunning, K., & Steel, G. (2007). Self-concept in young adults with a learning disability from the Jewish community. British Journal of Learning Disabilities, 35, 43–49. doi:10.1111/j.1468-3156.2006.00388.x
   Google Scholar
• Cambridge, P., & Forrester-Jones, R. (2003). Using individualised communication for interviewing people with intellectual disability: A case study of user-centred research. Journal of Intellectual & Developmental Disability, 28, 5–23. doi:10.1080/136682503100008687
   Web of Science ®Google Scholar
• Chadwick, D. (2017). Dysphagia management for people with intellectual disabilities: Practitioner identified process, barriers and solutions. Journal of Policy and Practice in Intellectual Disabilities, 14, 319–331. doi:10.1111/jppi.12216
   Web of Science ®Google Scholar
• Darawsheh, W. (2014). Reflexivity in research: Promoting rigour, reliability and validity in qualitative research. International Journal of Therapy and Rehabilitation, 21, 560–568. doi:10.12968/ijtr.2014.21.12.560
   Google Scholar
• Forster, S., & Iacono, T. (2014). The nature of affect attunement used by disability support workers interacting with adults with profound intellectual and multiple disabilities. Journal of Intellectual Disability Research, 58, 1105–1120. doi:10.1111/jir.12103
   PubMed Web of Science ®Google Scholar
• Gal, E., Hardal-Nasser, R., & Engel-Yeger, B. (2011). The relationship between the severity of eating problems and intellectual developmental deficit level. Research in Developmental Disabilities, 32, 1464–1469. doi:10.1016/j.ridd.2010.12.003
   PubMed Web of Science ®Google Scholar
• Griffiths, C., & Smith, M. (2016). Attuning: A communication process between people with severe and profound intellectual disability and their interaction partners. Journal of Applied Research in Intellectual Disabilities, 29, 124–138. doi:10.1111/jar.12162
   PubMed Web of Science ®Google Scholar
• Grove, N., Bunning, K., Porter, J., & Olsson, C. (1999). See what I mean: Interpreting the meaning of communication by people with severe and profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 12, 190–203. doi:10.1111/j.1468-3148.1999.tb00076.x
   Web of Science ®Google Scholar
• Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough: An experiment with data saturation and variability? Field Methods, 18, 59–82. doi:10.1177/1525822X05279903
   Web of Science ®Google Scholar
• Guthrie, S., Lancaster, J., & Stansfield, J. (2017). Consensus-building on developing dysphagia competence: A North West of England perspective: Developing dysphagia competence. International Journal of Language & Communication Disorders, 52, 854–869. doi:10.1111/1460-6984.12321
   PubMed Web of Science ®Google Scholar
• Guthrie, S., Lecko, C., & Roddam, H. (2015). Care staff perceptions of choking incidents: What details are reported? Journal of Applied Research in Intellectual Disabilities, 28, 121–132. doi:10.1111/jar.12116
   PubMed Web of Science ®Google Scholar
• Hall, E. (2010). Spaces of social inclusion and belonging for people with intellectual disabilities. Journal of Intellectual Disability Research, 54, 48–57. doi:10.1111/j.1365-2788.2009.01237.x
   PubMed Web of Science ®Google Scholar
• Hemsley, B. (2021). Co-creating safe and enjoyable meals for disability and dysphagia. University of Technology Sydney. https://www.uts.edu.au/partners-and-community/initiatives/social-justice-uts/centre-social-justice-inclusion/disability-research-network/our-projects/co-creating-safe-enjoyable-meals-disability-and-dysphagia
   Google Scholar
• Hostyn, I., Daelman, M., Janssen, M.J., & Maes, B. (2010). Describing dialogue between persons with profound intellectual and multiple disabilities and direct support staff using the scale for Dialogical Meaning Making. Journal of Intellectual Disability Research, 54, 679–690. doi:10.1111/j.1365-2788.2010.01292.x
   PubMed Web of Science ®Google Scholar
• Houghton, C., Casey, D., Shaw, D., & Murphy, K. (2013). Rigour in qualitative case-study research. Nurse Researcher, 20, 12–17. doi:10.7748/nr2013.03.20.4.12.e326
   PubMedGoogle Scholar
• Iacono, T. (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual & Developmental Disability, 31, 173–179. doi:10.1080/13668250600876392
   PubMed Web of Science ®Google Scholar
• Iacono, T., & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 41–51. doi:10.1046/j.1468-3148.2003.00141.x
   Web of Science ®Google Scholar
• The International Dysphagia Diet Standardisation Initiative. (2019). Preparing for IDDSI in Australia. https://iddsi.org/
   Google Scholar
• Irish Association of Speech & Language Therapists (IASLT). (2012). Standards of practice for speech and language therapists on the management of feeding, eating, drinking and swallowing disorders (Dysphagia). https://www.iaslt.ie/
   Google Scholar
• Healthy Ireland, Department of Health Ireland. (2020). Irish Food, Nutrition and Hydration Policy for Accessing Disability Services. https://www.hse.ie/eng/services/list/2/primarycare/community-funded-schemes/nutrition-supports/healthcare-professionals/food-nutrition-and-hydration-policy-for-adults-accessing-disability-services1.pdf
   Google Scholar
• Johnson, H., Douglas, J., Bigby, C., & Iacono, T. (2012). Social interaction with adults with severe intellectual disability: Having fun and hanging out. Journal of Applied Research Intellectual Disabilities, 25, 329–341. doi:10.1111/j.1468-3148.2011.00669.x
   PubMed Web of Science ®Google Scholar
• Lewis, A., & Porter, J. (2004). Interviewing children and young people with learning difficulties: Guidelines for researchers and multi-professional practice. British Journal of Learning Disabilities, 32, 191–197. doi:10.1111/j.1468-3156.2004.00313.x
   Google Scholar
• Manduchi, B., Fainman, G., & Walshe, M. (2020). Interventions for feeding and swallowing disorders in adults with intellectual disability: A systematic review of the evidence. Dysphagia, 35, 207–219. doi:10.1007/s00455-019-10038-5
   PubMed Web of Science ®Google Scholar
• Marriott, A., & Turner, S. (2016). Making reasonable adjustments to dysphagia services for people with learning disabilities. London: Public Health England.
   Google Scholar
• Matua, G.A., & Van Der Wal, D. (2015). Differentiating between descriptive and interpretive phenomenological research approaches. Nurse Researcher, 22, 22–27. doi:10.7748/nr.22.6.22.e1344
   PubMed Web of Science ®Google Scholar
• McConkey, R., & Collins, S. (2010). The role of support staff in promoting the social inclusion of persons with an intellectual disability. Journal of Intellectual Disability Research, 54, 691–700. doi:10.1111/j.1365-2788.2010.01295.x
   PubMed Web of Science ®Google Scholar
• Miller, R., Hagiliassis, N., Prain, M., & Wilson, J. (2014). Dysphagia support in disability services – stakeholder perspectives. Journal of Clinical Practice for Speech Language Pathologists, 16, 133–138.
   Google Scholar
• Money, D., & Thurman, S. (2002). Inclusive communication – coming soon near you! Speech & Language Therapy in Practice, Autumn, 4–6.
   Google Scholar
• Murphy, J., & Cameron, L. (2008). The effectiveness of talking mats with people with intellectual disability. British Journal of Learning Disabilities, 36, 232–241. doi:10.1111/j.1468-3156.2008.00490.x
   Google Scholar
• Murphy, J., Tester, S., Hubbard, G., Downs, M., & Macdonald, C. (2005). Enabling frail older people with a communication difficulty to express their views: The use of Talking Mats as an interview tool. Health and Social Care in the Community, 13, 95–107. doi:10.1111/j.1365-2524.2005.00528.x
   PubMed Web of Science ®Google Scholar
• National Disability Insurance Scheme (2013) Principles Relating to the Participation of People with Disability, 4.4.4. Retrieved from https://www.ndis.gov.au/about-us/operational-guidelines/overview-ndis-operational-guideline/overview-ndis-operational-guideline-about-ndis
   Google Scholar
• National Disability Insurance Scheme Quality and Safeguarding Commission. (2020). Practice Alert: Dysphagia, safe swallowing and mealtime management; Support participants with dysphagia to have a mealtime plan. Retrieved from https://www.ndiscommission.gov.au/document/2411
   Google Scholar
• National Patient Safety Agency. (2008). Dysphagia. Retrieved from www.npsa.nhs.uk/dysphagia
   Google Scholar
• Nyberg, M., Olsson, V., Örtman, G., Pajalic, Z., Andersson, A., Blücher, A., … Westergrem, A.J. (2018). The meal as a performance: Food and meal practices beyond health and nutrition. Ageing and Society, 38, 83–107. doi:10.1017/S0144686X16000945
   Web of Science ®Google Scholar
• O’Brien, B.C., Harris, I.B., Beckman, T.J., Reed, D.A., & Cook, D.A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine, 89, 1245–1248. doi:10.1097/ACM.0000000000000388
   PubMed Web of Science ®Google Scholar
• Queensland Government, (2019) Mealtime support resources. Retrieved from https://www.publications.qld.gov.au/dataset/mealtime-support-resources
   Google Scholar
• Robertson, J., Chadwick, D., Baines, S., Emerson, E., & Hatton, C. (2017). Prevalence of dysphagia in people with intellectual disability: A systematic review. Intellectual and Developmental Disabilities, 55, 377–391. doi:10.1352/1934-9556-55.6.377
   PubMed Web of Science ®Google Scholar
• Robertson, J., Chadwick, D., Baines, S., Emerson, E., & Hatton, C. (2018). People with intellectual disabilities and dysphagia. Disability & Rehabilitation, 40, 1345–1360. doi:10.1080/09638288.2017.1297497
   PubMed Web of Science ®Google Scholar
• Salomon, C., & Trollor, J. (2019). A scoping review of causes and contributors to deaths of people with disability in Australia. University of New South Wales, NDIS Commission website. Retrieved from https://www.ndiscommission.gov.au/sites/default/files/documents/2020-02/findingsreviewdeaths-people-disabilityaustraliafinalwith-amended-titleword-23.pdf
   Google Scholar
• Samuels, R., & Chadwick, D. (2006). Predictors of asphyxiation risk in adults with intellectual disabilities and dysphagia. Journal of Intellectual Disability Research, 50, 362–370. doi:10.1111/j.1365-2788.2005.00784.x
   PubMed Web of Science ®Google Scholar
• Sobal, J., & Nelson, M.K. (2003). Commensal eating patterns: A community study. Appetite, 41, 181–190. doi:10.1016/S0195-6663(03)00078-3
   PubMed Web of Science ®Google Scholar
• Speech Pathology Australia. (2012). Dysphagia clinical guidelines, 6.6, 20–25. https://www.speechpathologyaustralia.org.au/.
   Google Scholar
• Taua, C., Neville, C., & Hepworth, J. (2014). Research participation by people with intellectual disability and mental health issues: An examination of the processes of consent. International Journal of Mental Health Nursing, 23, 513–524. doi:10.1111/inm.12079
   PubMed Web of Science ®Google Scholar
• Therapy Focus. (2020). Mealtime management services. Retrieved from https://therapyfocus.org.au/our-services/specialist-services/mealtime-managment
   Google Scholar
• Threats, T.T. (2007). Use of the ICF in dysphagia management. Seminars in Speech and Language, 28, 323–333. doi:10.1055/s-2007-986529
   PubMedGoogle Scholar
• Tredinnick, G., & Cocks, N. (2014). Effectiveness of dysphagia training for adult learning disabilities support workers. British Journal of Learning Disabilities, 42, 125–132. doi:10.1111/bld.12018
   Web of Science ®Google Scholar
• Tufford, L., & Newman, P. (2012). Bracketing in qualitative research. Qualitative Social Work, 11, 80–96. doi:10.1177/1473325010368316
   Web of Science ®Google Scholar
• Valuing People A New Strategy for Learning Disability for the 21st Century. ( 2001). Retrieved from https://www.gov.uk/government/publications/valuing-people-a-new-strategy-for-learning-disability-for-the-21st-century
   Google Scholar
• Van Manen, M. (2014). Human science methods: Empirical and reflective activities. In M. van Manen (Eds.), Phenomenology of practice: Meaning-giving methods in phenomenological research and writing (1st ed., pp. 311–341). Abingdons, Oxfordshire, UK: Routledge.
   Google Scholar
• Wiesel, I., Bigby, C., & Carling-Jenkins, R. (2013). ‘Do You Think I’m Stupid’? Urban encounters between people with and without intellectual disability. Urban Studies, 50, 2391–2406. doi:10.1177/0042098012474521
   Web of Science ®Google Scholar