Latest News Archive

Please select Category, Year, and then Month to display items

Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability.

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential.

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context.

Empowering programme

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says.

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains.

Feedback from parents

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do … she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before … as a mother of a Down syndrome baby – but for any mother … I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot … my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …”

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq.

News Archive

Research project gives insight into the world of the deaf

2005-11-30

Mr Akach in conversation (using sign language) with his assistant Ms Emily Matabane. Photo: Lacea Loader

UFS research project gives insight into the world of the deaf

The Sign Language Division of the University of the Free State’s (UFS) Department of Afro-Asiatic Studies and Language Practice and Sign Language has signed a bilateral research project with the universities of Ghent and Brussels to write a book on sign language.

“We want to compare the Belgium and South African sign languages with each other. The book will be about the deaf telling us about themselves and how they live. It will also focus on the use of story telling techniques and the grammar used by deaf people. We want to see if the hand forms and the grammatical markers and other linguistic features that deaf people from these two countries use are the same or not,” said Mr Philemon Akach, lecturer at the UFS Sign Language Division and coordinator of the research.

According to Mr Akach, the sign language community in South Africa, with about 600 000 deaf people who use South African Sign Language (SASL) as first language, is quite big. “Over and above the deaf people in South Africa, there are also the non-deaf who use SASL, like the children of deaf parents etc. This book can therefore be used to teach people about the deaf culture,” he added.

Another of Mr Akach’s achievements is his election as Vice-President of the newly established World Association of Sign Language Interpreters (WASLI). The association was established earlier this month during a conference in Worcester.

Mr Akach has been actively involved with sign language interpretation since 1986 and has been interpreting at the World Congress of the World Federation of the Deaf (WFD) since 1987. “My appointment as Vice-President of the WASLI is an emotional one. I have been involved with deaf people for so long and have been trying to create awareness and obtain recognition for sign language, especially in Africa,” said Mr Akach. WASLI is affiliated to the WFD.

According to Mr Akach there was no formal structure in the world to support sign language and sign language interpreters. “Now we have the backup of WASLI and we can convince governments in other African countries and across the world to support deaf people by supporting WASLI and therefore narrow the communication gap between the deaf and the hearing. My main aim as Vice-President is to endeavour for the recognition of sign language and spoken language interpreters as a profession by governments,” he said.

According to Mr Akach the formal training of interpreters is of vital importance. “Anybody who has a deaf person in his/her family and can communicate in sign language can claim that they are an interpreter. This is not true. It is tantamount to think that all mother tongue or first language speakers are interpreters. Likewise students who learn sign language up to whatever level and are fluent in signing, should still join an interpreter’s programme,” he said.

“Sign language interpreting is a profession and should be presented as an academic course alongside other spoken languages. The UFS has been taking the lead with sign language and spoken language interpretation and was the first university on the African continent to introduce sign language as an academic course,” he said.

“Although sign language has always been an unknown language to young people it has become quite popular in recent years. This year we had a total of 160 students at the Sign Language Section of the UFS and the numbers seem to increase steadily every year,” he said.

Mr Akach’s assistant, Ms Emily Matabane, is deaf and they communicate in sign language. Ms Matabane also handles the tutorials with students to give them hands-on experience on how to use sign language.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
30 November 2005

Back

Economic and Management Sciences

Education

Health Sciences

The Humanities

Law

Natural and Agricultural Sciences

Theology and Religion

Open Distance Learning

Business School

We use cookies to make interactions with our websites and services easy and meaningful. To better understand how they are used, read more about the UFS cookie policy. By continuing to use this site you are giving us your consent to do this.

Accept