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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

The solution to student food insecurity is a holistic approach
2017-02-10

Description: Dietetics read more Tags: Dietetics read more

Dr Louise van den Berg from the Department of
Nutrition and Dietetics says the University of the Free State
is taking steps to teach students how to budget and make
them aware how important food nutrition is.
Photo: Pixabay 

Research at the University of the Free State (UFS) has indicated that nearly 60% of students are victims of food insecurity and suffer from hunger most of the time. The research by the UFS Faculty of Health Sciences shows that a further 25% are food insecure but are not hungry most of the time.

Senior Lecturer in the Department of Nutrition and Dietetics, Dr Louise van den Berg, says food insecurity is common among student populations across the world. However, local research shows that it is almost double that of tertiary institutions in developed countries.

Food insecurity among students caught many people off-guard
Dr Van den Berg says in South Africa nobody had really looked at the problem until recently “It seems student food insecurity has caught many people off-guard.” She says people tend to think of tertiary students as a privileged group.

The research has now indicated how deep the problem really is on campus. The students that most likely go hungry are single, male, black or coloured, and are generally first-generation students.

They are also mostly undergraduates, those paying their studies from non-bank loans or bursary means, those not living with their parents or guardians or those that need to support somebody else financially.

The results further indicate that those that are likely to suffer from hunger seldom or never have enough money for food but have to borrow money for food, have to ask for food, sell items to get food or steal food.

“A healthy student is a
successful student.”

Bursary money send back home for parents to survive
Dr Van den Berg agrees that one of the main reasons for the situation is economic stress. Research has shown students rarely spend money on food when resources are scarce. Furthermore, parents of students studying with bursaries are not always able to fully support them on campus. Some students send bursary money back home for their parents to survive.

She says other factors that contribute to campus food insecurity are that all over the world universities have terminated catered food halls due to high costs. “To a large extent this has created a food desert for students and now they need to look after themselves.”

To throw money at the problem does not seem to be the answer. 

Students are food-uncertain beings
The research indicates that young people on campus do not know where to buy food, much less the correct, nutritional food they need. Dr Van den Berg says most universities are now aware of the problem and have been taking steps. This includes teaching students how to budget and making them aware how important nutrition is for their success and their responsibility for themselves.

Universities are also looking at private funding for food aid and food schemes. Dr Van den Berg says other solutions are the restructuring of bursary fees, student self-help initiatives and food gardens.

The Faculty of Health Sciences is taking the initiative to manage a food blog on the UFS website. It will also use other social media platforms to post food-preparation videos and recipes for students.

Dr Van den Berg says it is important to grow the 15.6% group of students who indicated they are food secure because a healthy student is a successful student.

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