6 minute read
Safe and Enjoyable Meals for People with Disabilities and Dysphagia
Courtney Reddacliff, Research Project Manager, UTS Professor Bronwyn Hemsley, PhD, Head of Speech Pathology, UTS Fiona Given, Research Assistant and Person with Lifelong Swallowing Disability, UTS
OTA is pleased to be a key consortium partner for a new project funded by the NDIS Quality and Safeguards Commission under the Support for NDIS Providers Scheme “Supporting NDIS Participants with Swallowing Difficulties”. The interdisciplinary project team is led by Bronwyn Hemsley (Professor of Speech Pathology, University of Technology Sydney (UTS)) and Susan Balandin (Adjunct Professor in the Faculty of Health, UTS, Emeritus Professor, Deakin University). Dr Kath Benfer (University of Queensland), Professor Simon Darcy (The Business School, UTS), Dr Deb Debono (Faculty of Health, UTS), Mr Shaun McCarthy (University of Newcastle), and Professor Alison Lane (La Trobe University) are also investigators and experts to the project.
As well as OTA, consortium partners reflect the interdisciplinary nature of dysphagia and mealtime management in the field of lifelong disability. They include Speech Pathology Australia, Dietitians Australia, The Benevolent Society, Aruma, the NSW Council for Intellectual Disability, Assistive Technology Australia, Valid, Minda, people with lived experience of swallowing disorders and mealtime support, a consultant chef, occupational therapist, practising dietitian, and an inclusive learning design team. Dysphagia, or difficulty swallowing, affects an estimated eight per cent of the world’s population, including about two million Australians. People with dysphagia include people with intellectual disabilities, cerebral palsy, autism, stroke, traumatic brain injury, and others (Steele et al., 2015).
Dysphagia has a range of health and social impacts, affecting respiratory and nutritional health, and carries the risk of death. Dysphagia can also cause discomfort and fear during mealtimes, which can impact mental health and quality of life (Chadwick, 2017 and Holland et al., 2011). People with dysphagia often need texture-modified foods and fluids, including puree meals. This can sometimes result in a limited variety of foods, and unappealing food presentation.
Dysphagia management in people with disabilities is necessarily multidisciplinary (Chadwick, 2017). The person with dysphagia should be central to a team that includes family members and direct support workers, speech pathologists, occupational therapists, dietitians, and physiotherapists.
A common barrier to effective dysphagia management is lack of training in mealtime management for direct support workers (Chadwick, 2017). Innovative training in effective mealtime assistance and food texture modification is expected to prevent
aspiration and choking by ensuring effective and safe practices (Hemsley et al., 2019).
Training in providing safe and enjoyable meals aims to increase knowledge about the important support role of the assistant, ways to identify symptoms and risks of dysphagia, and dysphagia management strategies including modification of food and fluid consistencies. It is also important to address the concerns and beliefs of those who hesitate, or struggle, to follow dysphagia management recommendations (Chadwick, 2017).
Mealtimes are an important opportunity for socialisation and enjoyment. It is crucial that members of the intervention team understand, and respond respectfully to, the social, cultural, and environmental aspects of mealtime. They must recognise the importance of informed choice and ethical decision making in dysphagia management (Hemsley et al., 2019).
In July 2020, the NDIS Quality and Safeguards Commission funded UTS and key partners to lead a one-year project to develop a national training course for direct support workers and others to reduce the choking deaths of people with disabilities and swallowing disorders. In April 2021, the inclusive, interdisciplinary, and collaborative team at UTS will launch a co-created
Fiona Given, Research Assistant at the University of Technology Sydney, in the Co-Creating Safe and Enjoyable Meals project. Fiona is a person with cerebral palsy and lifelong dysphagia. It is important that my direct support workers do not rush me during mealtimes, and that they prepare my food in a way I can eat safely. Equally important is that they know if I am coughing or choking, and are confident in responding.
My support workers know how to prepare my food so I can eat it safely, but some of them do rush me while I am eating. Hopefully this project will reinforce the importance of not rushing people with disabilities at mealtimes.
Instruction on food preparation will help support workers prepare enjoyable meals that are safe for people with disabilities to eat.
From an occupational therapy perspective, I use a range of mealtime equipment, including built-up cutlery, rimmed plates, and cups with lids and straws. It is important that support workers know how I use them, and where such equipment can be bought.
Although all my direct support workers have up-to-date first aid qualifications, many of them freeze and get one of my parents if I am choking. Not only is this not age appropriate as I am an adult, but it also puts me in danger. This project will therefore teach support workers how to respond to an immediate crisis, and give them the confidence to do so. This will give me greater confidence during mealtimes, and reduce the number of preventable deaths from mealtime mismanagement.
Prof Bronwyn Hemsley, Fiona Given, Xanthe Lawson, Courtney Reddacliff
training package for people with disabilities, direct support workers, family members, and NDIS service providers on swallowing difficulty and mealtime management. The Co-Creating Safe and Enjoyable Meals for People with Swallowing Disability training will support NDIS providers to meet registration requirements in the delivery of safe and enjoyable meals, while also reducing the risk of choking death, and increasing the nutritional benefit and enjoyment of meals.
Implementation of the training, including a train-the-trainer model, will help NDIS service providers to ensure staff recognise the onset of dysphagia with ageing, or any risk of, or experience of, swallowing difficulties. Staff will learn how to manage and respond to people with dysphagia in ways that do not restrict their rights or impact negatively on their health or safety. The benefits to people with disabilities are better health, better wellbeing, and improved participation in the cultural aspects of meals.
Having mealtime assistance training that is well informed, safe, and easily adapted to individual NDIS participants is essential. Aspiration pneumonia and poor nutrition can build up over time, but choking on food can occur anytime. Adverse events such as choking on food are distressing for both the person involved and bystanders.
This project will ensure service providers know how to manage mealtimes safely, and how to manage an immediate crisis should it occur. The training will be evaluated over March and April 2021, with final reporting to complete the project at the end of June 2021.
References Chadwick, D. D. (2017). Dysphagia Management for People with Intellectual Disabilities: Practitioner Identified Processes, Barriers, and Solutions. Journal of Policy and Practice in Intellectual Disabilities, 14(4), 319-331. doi:10.1111/jppi.12216 Hemsley, B., Steel, J., Sheppard, J. J., Malandraki, G. A., Bryant, L., & Balandin, S. (2019). Dying for a Meal: An Integrative Review of Characteristics of Choking Incidents and Recommendations to Prevent Fatal and Nonfatal Choking Across Populations. American Journal of Speech – Language Pathology (Online), 28(3), 1283-1297. doi:http://dx.doi.org/10.1044/2018_AJSLP-18-0150 Holland, G., Jayasekeran, V., Pendleton, N., Horan, M., Jones, M., & Hamdy, S. (2011). Prevalence and Symptom Profiling of Oropharyngeal Dysphagia in a Community Dwelling of an Elderly Population: a Self-Reporting Questionnaire Survey. Dis Esophagus, 24(7), 476-480. doi:10.1111/j.1442-2050.2011.01182.x Steele, C.M., Alsanei, W.A., Ayanikalath, S. et al. The Influence of Food Texture and Liquid Consistency Modification on Swallowing Physiology and Function: A Systematic Review. Dysphagia 30, 2–26 (2015). https:// doi.org/10.1007/s00455-014-9578-x
LEARN MORE
To find out more about this project, please visit enjoysafemeals.com or contact sarah.jones@otaus.com.au
