Pretoria - How do people who cannot speak consult with their doctor and tell them what is wrong?
To answer this, researchers at the University of Pretoria’s (UP) Centre for Augmentative and Alternative Communication in the Faculty of Humanities conducted a study that involved designing a framework to develop health education material for people with communication disabilities.
“Those with severe communication disabilities are often marginalised and viewed as people who have nothing to say,” said Augmentative and Alternative Communication director Professor Shakila Dada.
“This could not be further from the truth, which is why the centre is committed to ensuring that people have access to various means of communication through augmentative and alternative communication.
“We do this in consultation with people who have complex communication needs because we believe that nothing should be done for people with disabilities without including them in the process. It is also important to remember that augmentative and alternative communication is not about the boards or technologies, but about the people.”
The study was published in the journal, Health Expectations, and aimed to bring accessibility and justice for people with complex communication needs into sharp focus, particularly during the Covid-19 pandemic. The study found that when it came to accessing health care, people with disabilities faced difficulties in three distinct areas: interacting with healthcare workers, experiencing feelings of disempowerment and the presentation of health-care material.
Health-care providers did not have the skills, time, communication resources or skills to interact patiently with people with complex communication needs. In addition, health-care workers did not have the right attitude; many would speak down to patients with complex communication needs or not give them the opportunity to make health-related decisions for themselves.
People with complex communication needs also had their own internal barriers in terms of their level of empowerment, and their willingness and ability to speak for themselves; their skill at making themselves understood also varied, as well as their access to assistive devices (such as a computer or smartphone) to assist their alternative communication needs.
Another barrier was the format in which health-care information was presented. This included how complex a pamphlet or brochure was to read, the patient’s home language and comprehension levels, how the content was presented and the integrity of the information. To mitigate these challenges, UP’s Centre for Augmentative and Alternative Communication engaged the services of a staff member, Constance Ntuli, who has complex communication needs. Her contribution to the project was critical.
Ntuli lost her voice as a child and got her first assisted communication device in 2009. Her path to a career at the centre began when she attended UP’s Fofa Communication Empowerment Programme; she can now communicate through electronic communication devices.
“My job entails raising awareness about augmentative and alternative communication,” she said.
“Working at the centre has helped my self-esteem. I am grateful because it is not easy being disabled and jobless, or clueless about my future. I love helping other people and opening up the world for those who can’t speak by working on projects that greatly help and improve our lives directly.”
As a disability advocate, Ntuli told of her experiences trying to access health care. “I really didn’t enjoy going to the hospital because sometimes I felt judged. As a mother with disabilities, it is sometimes twice as hard.”
Ntuli said that the centre’s study was important because it encouraged people with disabilities to be independent. “There are some things that I want to discuss with my doctor confidentially. If there isn’t privacy and someone else has to speak for me then it means everyone will have to know my medical affairs. Everyone deserves to have privacy and to be treated with the care that they deserve.”
The study was funded by the UN Children’s Fund and has resulted in free-to-use communication boards. Those with complex communication needs can use these to communicate without an electronic device when at hospitals and doctors, giving them a greater sense of dignity and autonomy.
Pretoria News