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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

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

Champagne and cancer have more in common than you might think

2013-05-08

Photo: Supplied
08 May 2013

No, a glass of champagne will not cure cancer....

…But they have more in common than you might think.

Researchers from the Departments of Microbial Biochemical and Food Biotechnology, Physics and the Centre for Microscopy at the University of the Free State in South Africa were recently exploring the properties of yeast cells in wine and food to find out more of how yeast was able to manufacture the gas that caused bread to rise, champagne to fizz and traditional beer to foam. And the discovery they made is a breakthrough that may have enormous implications for the treatment of diseases in humans.

The team discovered that they could slice open cells with argon gas particles, and look inside. They were surprised to find a maze of tiny passages like gas chambers that allowed each cell to ‘breathe.’ It is this tiny set of ‘lungs’ that puts the bubbles in your bubbly and the bounce in your bread.

But it was the technique that the researchers used to open up the cells that caught the attention of the scientists at the Mayo Clinic (Tumor Angiogenesis and Vascular Biology Research Centre) in the US.

Using this technology, they ultimately aim to peer inside cells taken from a cancer patient to see how treatment was progressing. In this way they would be able to assist the Mayo team to target treatments more effectively, reduce dosages in order to make treatment gentler on the patient, and have an accurate view of how the cancer was being eliminated.

“Yes, we are working with the Mayo Clinic,” said Profes Lodewyk Kock from the Microbial, Biochemical and Food Biotechnology Department at the UFS.

“This technique we developed has enormous potential for cell research, whether it is for cancer treatment or any other investigation into the working of cells. Through nanotechnology, and our own invention called Auger-architectomics, we are able to see where no-one has been able to see before.”

The team of Prof Kock including Dr Chantel Swart, Kumisho Dithebe, Prof Hendrik Swart (Physics, UFS) and Prof Pieter van Wyk (Centre for Microscopy, UFS) unlocked the ‘missing link’ that explains the existence of bubbles inside yeasts, and incidentally have created a possible technique for tracking drug and chemotherapy treatment in human cells.

Their work has been published recently in FEMS Yeast Research, the leading international journal on yeast research. In addition, their discovery has been selected for display on the cover page of all 2013 issues of this journal.

One can most certainly raise a glass of champagne to celebrate that!

There are links for video lectures on the technique used and findings on the Internet at:

1. http://vimeo.com/63643628 (Comic version for school kids)

2. http://vimeo.com/61521401 (Detailed version for fellow scientists)

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