Message banking brings hope for persons with MND

PROBLEM

Facing the reality of a diagnosis of Motor Neuron Disease (MND) and preparing for the possibility of losing one's ability to speak is extremely difficult. Although not everyone with MND experiences problems with speech, for most people muscles in the mouth, throat and chest are affected. The physical impairment that results from MND can also impact on communication through gestures and facial expressions. The loss of speech can be frightening and hard to adjust to. Just imagine not being able to make people understand what your needs are (especially during hospital stays), and in emotional terms, such as losing the ability to express your personality, make jokes and take part in normal conversation.

SOLUTION

Message banking involves the digital recording and storing of words, phrases, sentences, personally meaningful sounds and stories (often referred to as 'legacy messages'). When their speech starts deteriorating or becomes completely unintelligible, message banking allows the person to retrieve and 'speak' these messages using their own voice, natural inflection and intonation, through a variety of augmentative and alternative communication (AAC) systems.

Ms Imke Oosthuizen, a master's student at the Centre for Augmentative and Alternative Communication at the University of Pretoria, recently conducted a study on message banking, a relatively new early intervention strategy that could simplify life for persons with MND by facilitating more effective communication and sustained social closeness.

According to Dr Shakila Dada, Ms Oosthuizen's research supervisor, message banking is an important early intervention strategy for people with MND. It is also a relatively low-technology strategy that can be learnt easily and quickly and it can be used with a smart phone or any other smart device.

PROGRESS

Ms Oosthuizen's study focussed on comparing the perceptions of persons with MND, those of their significant others and those of speech-language pathologists in South Africa with regard to message banking. Most persons with MND and their significant others reported that they had never heard of AAC or message banking, while many speech-language pathologists knew very little about message banking.

This study provided valuable insights into the need for training in the use of message banking for people with MND and in the process of selecting the categories of messages to bank. Prof Dada notes that the gap in training can easily be filled through continuing professional development and undergraduate training.

The Centre hopes to continue in this line of research at PhD level in the future.

Facing the reality of a diagnosis of Motor Neuron Disease (MND) and preparing for the possibility of losing one's ability to speak is extremely difficult. Ms Imke Oosthuizen, a master's student at the Centre for Augmentative and Alternative Communication at the University of Pretoria, recently conducted a study on message banking, a relatively new early intervention strategy that could simplify life for persons with MND by facilitating more effective communication and sustained social closeness.

Dr Shakila Dada, Ms Oosthuizen's research supervisor, says that message banking is an important early intervention strategy for people with MND. 'It is also a relatively low-technology strategy that can be learnt easily and quickly and it can be used with a smart phone or any other smart device.'

Ms Oosthuizen's study focussed on comparing the perceptions of persons with MND, those of their significant others and those of speech-language pathologists with regard to message banking. Most persons with MND and their significant others reported that they had never heard of AAC or message banking, while many speech-language pathologists knew very little about message banking.

This study provides valuable insights into the need for training in the use of message banking for people with MND and in the process of selecting the categories of messages to bank. Prof Dada notes that the gap in training can easily be filled through continuing professional development and undergraduate training.

The Centre hopes to continue in this line of research at PhD level in the future.

Page 1
Page 2

Dr Shakila Dada

July 25, 2016

Estimated Reading Time: 3 minutes

Page 1
Page 2

Researchers

Professor Shakila Dada

Professor Shakila Dada of the University of Pretoria’s (UP) Centre for Augmentative and Alternative Communication did her undergraduate studies at the University of Durban-Westville (now the University of KwaZulu-Natal). She has been doing research at UP in various capacities since 2003 and has been a full-time employee since 2014.
Her research seeks to systematically describe and understand the communication and participation patterns of people with complex communication needs. Prof Dada focuses her research on the way in which graphic symbol-based augmentative and alternative communication (AAC) systems can be used to facilitate both language learning for these individuals and their participation in society.

She says that her field of research contributes to the betterment of the world because communication is a basic human right and is intrinsic to our humanity. “AAC helps people who have communication disabilities to participate in everyday life situations such as going to school or university, or being employed,” Prof Dada says. “Participating in society is an important health outcome and is vital for well-being.” Her research matters, she says, because it aims to ensure that people who are unable to speak can tell their stories using AAC systems.

Much of Prof Dada’s work focuses on the role of graphic symbol learning to facilitate the comprehension of language. She is particularly interested in the amount of intervention required and how to train communication partners to facilitate language learning. Prof Dada has also looked at the role of aided modelling for children and adults who require AAC; this includes people with aphasia and dementia.

Over the past 18 months, she has embarked on several new research projects, one of which deals with the accessibility of health information for those with communication disabilities. Taking care of our health involves getting information by accessing relevant health services in order to educate ourselves. For those with severe communication disabilities, this can prove to be an uphill battle as many have difficulty understanding this sort of information. The COVID-19 pandemic has exacerbated the situation. Easily accessible, reliable health information is absolutely necessary in these times, and for people with communication disabilities, navigating this landscape can be particularly challenging. Health information is often couched in confusing, inaccessible language and presented in formats that do not support comprehension and retention. As a result, those with communication disabilities may be underinformed or misinformed, with detrimental health outcomes.

As such, UP’s Centre for Augmentative and Alternative Communication, the Future Africa Institute at UP and UNICEF jointly embarked on a project titled Co-designing Health Communication and Education Materials. These materials were co-developed through extensive consultations and collaborations with various stakeholders, including youth with disabilities, caregivers of children and youth with communication disabilities, and professionals who work in the health and education sectors.

Prof Dada is also working with colleagues to develop and implement a youth leadership programme that will provide vulnerable youth and youth who are Deaf with the skills and opportunities to participate in decisions regarding their lives and futures. In addition, the programme aims to provide youth with the mechanisms they require to hold the structures and institutions that should be looking after them accountable for the care their receive. The project will be implemented in partnership with Leeds University in the UK and various NGOs. Ultimately, it aims to provide evidence of how youth can guide and improve their own futures and those of their communities through meaningful engagement with government in order to maintain accountability for their rights.

Another notable project that Prof Dada is involved in focuses on optimising the effectiveness and equality of collaborations in early childhood intervention (ECI) in South Africa. It takes into account new challenges that have been brought about by the COVID-19 pandemic. A nationwide survey is currently being conducted to understand how ECI practitioners across disciplines communicate with one another in the context of the pandemic. The project is being conducted with colleagues at Roehampton University, London, and UP’s Information Design Division of the School of the Arts in the Faculty of Humanities. It will generate a set of evidence-based strategies for multi-agency work in ECI in South Africa using digital animation as a channel for dissemination.

The InnoFood Project at UP is yet another initiative that Prof Dada is bringing her expertise to. It is being conducted with colleagues in the University’s Department of Consumer and Food Sciences in the Faculty of Natural and Agricultural Sciences. Prof Dada is exploring strategies such as graphic symbol supports to ensure that no person is excluded from the research because of low literacy levels or because they do not speak the language of the researchers. “Our main role is to ensure that the materials, instructions, surveys and communication about the project are accessible (easy to read),” Prof Dada explains.

She also liaises with UP’s Department of African Languages in translating project material into local languages. “This ensures a more inclusive, equitable research agenda, ensuring that participants who may be otherwise marginalised are included in the research process,” she says. A further intersection with the Humanities Faculty is exploring the impact of research on policy as well as ensuring knowledge translation from the sciences into an accessible format – infographics, training manuals and animation – so that findings are disseminated in an equitable manner.
As for who inspires her research efforts, Prof Dada says: “Quite simply my mother – she always encouraged me to study further and understand better. She was adamant that I get the opportunities for education denied to her.”

Prof Dada encourages school learners or undergraduates who are interested in her field to be brave, ask questions about the field of study and make contact with professionals in the field.
In her free time, she enjoys reading and taking long, leisurely walks. She loves spending time with her family and listening to the views of her children.

More from this Researcher

Related Photo

Message banking brings hope for persons with MND

Other Related Research

Story

RE.SEARCH 13: One Health

This edition is curated around the concept of One Health, in which the University of Pretoria plays a leading role globally, and is based on our research expertise in the various disciplines across healthcare for people, the environment and animals.
Story

Better brain health: UP neurosurgeon develops non-invasive, eye-based method to measure intracranial pressure

Paediatric neurosurgeon Professor Llewellyn Padayachy, Head of the Department of Neurosurgery at the University of Pretoria’s (UP) Steve Biko Academic Hospital, is redefining how brain-related diseases are diagnosed and treated, especially in low-resource settings. He’s at the forefront of pioneering work in non-invasive techniques to assess and measure raised pressure inside the skull,...
Infographic

Minds matter

Africa faces immense challenges in neurosurgery, such as severe underfunding, a lack of training positions and a high burden of disease. There is one neurosurgeon per four million people, far below the WHO’s recommendation of one per 200 000. This shortage, compounded by the lack of a central brain tumour registry and limited access to diagnostics, severely impacts patient outcomes.