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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

Workplace discrimination and unfair practices explored in new book
2017-09-13

 Description: Denine read more Tags: Denine Smit, Labour law, employee relations, bullying, vulnerability, research, Damain Viviers 

Dr Denine Smit
Photo: Supplied

Two law scholars, Dr Denine Smit and Dr Damian Viviers, from the Faculty of Law at the University of the Free State (UFS) recently launched a book titled Vulnerable Employees, which was inspired by their interest in researching, creating awareness and providing a legal exposition in relation to employees who are vulnerable and experience prejudice and dignity violations in the workplace. These include workplace bullying, appearance-based discrimination, those who are gender fluid or have mental-health conditions.
“Dr Viviers, who is also a former student of mine, and I, have been working together for years and share a common understanding in relation to our various topics of interest. We often share the same train of thought. This is how we came to work together to produce this book,” said Dr Smit.


Research focused on employee challenges in the workplace

The book expands on the field of knowledge regarding certain categories of employees who, as a consequence of various mutable, immutable and semi-immutable characteristics, as well as behavioural experiences, are rendered vulnerable in their employment relationships. The book draws on various social, psychological and other empirical considerations, as well as comparative legal research from foreign and international law, in order to expand on the legal position under the South African legal framework governing these conditions. While the book first and foremost constitutes a compendium of research to be used for this purpose, it also serves as a practical guide for all legal practitioners, human resources managers, other labour stakeholders and the judiciary.

Book draws strength in other academic fields
Vulnerable Employees was launched on 28 July 2017 at the UFS library, to an audience of academics and students, with a panel discussion made up of the authors and two other panellists. One of the panellists was Dr Katinka Botha, a leading psychiatrist in the Free State who has a wealth of experience in this field. “Her selection as a panellist was motivated by the various significant inter-disciplinary considerations and intersections between psychology, psychiatry and law, contained in the book,” said Dr Smit. 
“Dr Botha’s expertise was invaluable in shedding light on mental-health considerations during the panel discussion.” 
Mr Lesley Mokgoro, the other panellist, is a leading labour law practitioner, as well as director and head of the Dispute Resolution Practice Group at Phatshoane Henney Attorneys. “His years of experience working with all role players in the employment domain, as well as his extensive legal knowledge and expertise, made him uniquely qualified to serve on the panel and deliver an opinion of the practical and academic value of the book,” said Dr Smit.


Workplace policies key to securing employee rights

There are a number of growing trends in the workplace that could shape the practice of labour law or workplace policies. Dr Smit said the need for employers to regulate workplace culture, particularly in relation to bullying, harassment and unfair discrimination, in line with the South African legal framework, was a fundamental need in all workplaces. Effective workplace policies may be used to clearly outline the relevant “dos and don’ts” to employees, as well as the procedures and processes that may be followed in order to address such conduct. Workplace policies serve to advance legal certainty and efficiency, since the rights and obligations of all role players are clearly demarcated, or should be, in terms of a well-drafted and considered policy. 
The book is one of several publications produced by Dr Smit in collaboration with Dr Viviers on the topic of workplace discrimination and the law. The two scholars are working on another book to be published at the end of 2017.

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