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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

NRF researcher addresses racial debates in classrooms
2017-03-24

Description: Dr Marthinus Conradie Tags: Dr Marthinus Conradie

Dr Marthinus Conradie, senior lecturer in the
Department of English, is one of 31 newly-rated National
Research Foundation researchers at the University of
the Free State.
Photo: Rulanzen Martin

Exploring numerous norms and assumptions that impede the investigation of racism and racial inequalities in university classrooms, was central to the scope of the research conducted by Dr Marthinus Conradie, a newly Y-rated National Research Foundation (NRF) researcher.

Support from various colleagues
He is one of 31 newly-rated researchers at the University of the Free State (UFS) and joins the 150 plus researchers at the university who have been rated by the NRF. Dr Conradie specialises in sociolinguistics and cultural studies in the UFS Department of English. “Most of the publications that earned the NRF rating are aimed to contributing a critical race theoretic angle to longstanding debates about how questions surrounding race and racism are raised in classroom contexts,” he said.

Dr Conradie says he is grateful for the support from his colleagues in the Department of English, as well as other members of the Faculty of the Humanities. “Although the NRF rating is assigned to a single person, it is undoubtedly the result of support from a wide range of colleagues, including co-authors Dr Susan Brokensha, Prof Angelique van Niekerk, and Dr Mariza Brooks, as well as our Head of Department, Prof Helene Strauss,” he said.

Should debate be free of emotion?
His ongoing research has not been assigned a title yet, as he and his co-author does not assign titles prior to drafting the final manuscript. “Most, but not all, of the publications included in my application to the NRF draw from discourse analysis of a Foucauldian branch, including discursive psychology,” Dr Conradie says. His research aims to suggest directions and methods for exploring issues about race, racism, and racial equality relating to classroom debates. One thread of this body of work deals with the assumption that classroom debates must exclude emotions. Squandering opportunities to investigate the nature and sources of the emotions provoked by critical literature, might obstruct the discussion of personal histories and experiences of discrimination. “Equally, the demand that educators should control conversations to avoid discomfort might prevent in-depth treatment of broader, structural inequalities that go beyond individual prejudice,” Dr Conradie said. A second stream of research speaks to media representations and cultural capital in advertising discourse. A key example examines the way art from European and American origins are used to imbue commercial brands with connotations of excellence and exclusivity, while references to Africa serve to invoke colonial images of unspoiled landscapes.

A hope to inspire further research
Dr Conradie is hopeful that fellow academics will refine and/or alter the methods he employed, and that they will expand, reinterpret, and challenge his findings with increasing relevance to contemporary concerns, such as the drive towards decolonisation. “When I initially launched the research project (with significant aid from highly accomplished co-authors), the catalogue of existing scholarly works lacked investigations along the particular avenues I aimed to address.”

Dr Conradie said that his future research projects will be shaped by the scholarly and wider social influences he looks to as signposts and from which he hopes to gain guidelines about specific issues in the South African society to which he can make a fruitful contribution.

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