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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

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

‘Is the South African university curriculum ‘colonial'?’ asks Prof Jansen
2017-11-24

Description: Jansen readmore Tags: Prof Jonathan Jansen, colonial, university curriculum, western knowledge

From left; Prof Corli Witthuhn, Vice-Rector: Research; former Rector and Vice-
Chancellor of the UFS, Prof Jonathan Jansen; Prof Michael Levitt, and
Prof Francis Petersen at the celebration lecture at the UFS.
Photo: Johan Roux

One of the critical issues that emerged from the South African student protests during 2015 and 2016 was a demand for the decolonisation of university curriculums. 

A senior professor at the Stellenbosch University, Prof Jonathan Jansen, said the number of people, including academics, who joined the cause without adequately interrogating the language of this protest, was astonishing. “The role of social scientists is to investigate new ideas … when something is presented to the world as truth.” Prof Jansen was speaking during a celebration lecture at the University of the Free State in Bloemfontein on 15 November 2017. 

Large amount of knowledge not African

He said the accusation is correct to a limited degree. “The objection, in essence, is against the centring of Western, and especially European knowledge, in institutional curricula.” There is no doubt that most of what constitutes curriculum knowledge in South African universities, and in universities around the world, derive from the West. “The major theories and theorists, the methodologists and methods are disproportionally situated outside of the developing world,” Prof Jansen said. 

The dilemma is, how will South Africa and the continent change the locus of knowledge production, considering the deteriorating state of public universities? “In the absence of vibrant, original, and creative knowledge production systems in Africa and South Africa, where will this African-centred or African-led curriculum theory come from,” Jansen asked. He says the re-centring of a curriculum needs scholars with significant post-doctoral experiences that are rooted in the study of education and endowed with the critical independence of thought. “South Africa's universities are not places where scholars can think. South African universities’ current primary occupation is security and police dogs,” Prof Jansen said. 

Collaboration between African and Western scholars
“Despite the challenges, not everything was stuck in the past,” Prof Jansen said. South African scholars now lead major research programmes in the country intellectually. The common thread between these projects is that the content is African in the subjects of study, and the work reflects collaboration with academics in the rest of the world. These research projects attract postgraduate students from the West, and the research increasingly affects curriculum transformations across university departments. There is also an ongoing shift in the locus of authority for knowledge production within leading universities in South Africa. Prof Jansen feels a significant problem that is being ignored in the curriculum debate, is the concern about the knowledge of the future. How does South Africa prepare its young for the opportunities provided by the groundswell of technological innovation? “In other parts of the world, school children are learning coding, artificial intelligence, and automation on a large scale. They are introduced to neuroscience and applied mathematics,” he said.

Prof Jansen said, in contrast, in South Africa the debate focuses on the merits of mathematics literacy, and what to do with dead people’s statues.

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