Latest News Archive

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

Nat Nakasa the inspiration behind UFS academic’s PhD thesis
2017-01-09

 Description: 001 Dr Willemien Marais Tags: 001 Dr Willemien Marais

Photo: Supplied

“I’m interested in alternative ways of approaching things, so I wanted to look at how journalism can be used in an unconventional way to contribute to a developing society.”

This is why Dr Willemien Marais, a lecturer in the Department of Communication Science at the University of the Free State (UFS), decided to title her thesis: Nat Nakasa as existential journalist, describing a form of journalism that places emphasis on the individual’s experiences.

“Existentialism is a philosophy that provides scope for an individual approach to life, and I like Nat Nakasa’s writing because of his excellent sense of humour despite his horrific circumstances as a black journalist during apartheid,” she says.

A practical approach to writing

Dr Marais analysed Nat Nakasa’s approach to journalism through articles he wrote in the early 1960s. She searched for relevant themes of existentialist philosophy in Nakasa’s work in order to prove that he could be read as an existential journalist.

She mentions that in terms of contemporary relevance, Nakasa’s approach to journalism suggests that existentialism could provide the journalist with a practical approach to writing, especially for those journalists working in developing societies.

“The relevance of this approach lies in the fact that any society is always between things – the old and the new – which might require the journalist to operate outside the boundaries of conventional journalism.”

This study was qualitative in nature because of the interpretation required. She mentions that it was basically one of many possible interpretations of Nakasa’s work; with this one using existentialism as a lens.

An intellectually stimulating thesis

Dr Marais quotes French existentialist Jean-Paul Sartre, who said that interpreting someone’s work, especially someone who was no longer alive, was open to “thousands of shimmering, iridescent, relevant meanings”, and her research represents one of these possible meanings of Nakasa’s work as a journalist.

When asked how long she had worked on her thesis, Dr Marais simply answered “too long!” She mentions that her thesis was initially more of an intellectual exercise. Whereas the actual act of writing took about four months, she spent many years thinking about the topic. “Now that all is said and done, I realise I had to grow into the topic. It took me a while to realise that true understanding does not come overnight!”

Dr Marais mentions that other than herself and the work of Nat Nakasa, there were no other roleplayers involved. “For many, many years it was just Nat Nakasa and I. It was frustrating and exhilarating all at the same time.”

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