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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

Nanotechnology breakthrough at UFS

2010-08-19

Ph.D students, Chantel Swart and Ntsoaki Leeuw

Scientists at the University of the Free State (UFS) made an important breakthrough in the use of nanotechnology in medical and biological research. The UFS team’s research has been accepted for publication by the internationally accredited Canadian Journal of Microbiology.

The UFS study dissected yeast cells exposed to over-used cooking oil by peeling microscopically thin layers off the yeast cells through the use of nanotechnology.

The yeast cells were enlarged thousands of times to study what was going on inside the cells, whilst at the same time establishing the chemical elements the cells are composed of. This was done by making microscopically small surgical incisions into the cell walls.

This groundbreaking research opens up a host of new uses for nanotechnology, as it was the first study ever in which biological cells were surgically manipulated and at the same time elemental analysis performed through nanotechnology. According to Prof. Lodewyk Kock, head of the Division Lipid Biotechnology at the UFS, the study has far reaching implications for biological and medical research.

The research was the result of collaboration between the Department of Microbial, Biochemical and Food Biotechnology, the Department of Physics (under the leadership of Prof. Hendrik Swart) and the Centre for Microscopy (under the leadership of Prof.Pieter van Wyk).

Two Ph.D. students, Chantel Swart and Ntsoaki Leeuw, overseen by professors Kock and Van Wyk, managed to successfully prepare yeast that was exposed to over-used cooking oil (used for deep frying of food) for this first ever method of nanotechnological research.

According to Prof. Kock, a single yeast cell is approximately 5 micrometres long. “A micrometre is one millionth of a metre – in laymen’s terms, even less than the diameter of a single hair – and completely invisible to the human eye.”

Through the use of nanotechnology, the chemical composition of the surface of the yeast cells could be established by making a surgical incision into the surface. The cells could be peeled off in layers of approximately three (3) nanometres at a time to establish the effect of the oil on the yeast cell’s composition. A nanometre is one thousandth of a micrometre.

Each cell was enlarged by between 40 000 and 50 000 times. This was done by using the Department of Physics’ PHI700 Scanning Auger Nanoprobe linked to a Scanning Electron Microscope and Argon-etching. Under the guidance of Prof. Swart, Mss. Swart en Leeuw could dissect the surfaces of yeast cells exposed to over-used cooking oil.

The study noted wart like outgrowths - some only a few nanometres in diameter – on the cell surfaces. Research concluded that these outgrowths were caused by the oil. The exposure to the oil also drastically hampered the growth of the yeast cells. (See figure 1)

Researchers worldwide have warned about the over-usage of cooking oil for deep frying of food, as it can be linked to the cause of diseases like cancer. The over-usage of cooking oil in the preparation of food is therefore strictly regulated by laws worldwide.

The UFS-research doesn’t only show that over-used cooking oil is harmful to micro-organisms like yeast, but also suggests how nanotechnology can be used in biological and medical research on, amongst others, cancer cells.

Figure 1. Yeast cells exposed to over-used cooking oil. Wart like protuberances/ outgrowths (WP) is clearly visible on the surfaces of the elongated yeast cells. With the use of nanotechnology, it is possible to peel off the warts – some with a diameter of only a few nanometres – in layers only a few nanometres thick. At the same time, the 3D-structure of the warts as well as its chemical composition can be established.

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za
18 August 2010

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