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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

What do diamonds, chocolates, bugs and almost 30 Nobel Prizes have in common? Crystallography

2014-10-15

Some of the keynote speakers and chairpersons at the third world summit in the International Year of Crystallography (in Africa) were, from the left, front: Profs Abdelmalek Thalal (Morocco), Prosper Kanyankogote (University of Kinshasa, Democratic Republic of the Congo); Habib Bougzala (Tunisia), Santiago Garcia-Granda (IUCr, University Oviedo, Spain), Michele Zema (IYCr 2014, Italy/UK) and Dr Jean-Paul Ngome-Abiaga (UNESCO, Paris, France); back: Dr Thomas Auf der Heyde (Acting Director-general, South African Department of Science and Technology); Dr Petrie Steynberg (SASOL) and Prof André Roodt (UFS, host).

Photo: Marija Zbacnik

The third world summit in the International Year of Crystallography (in Africa) was hosted by Prof André Roodt, Head of the Department of Chemistry and President of the European Crystallographic Association, at the University of the Free State in Bloemfontein.

A declaration with and appeal to support crystallography and science across Africa, was signed.

When one mentions 'Crystallography', or more simply 'crystals', what comes to mind? Diamonds? Perhaps jewellery in general? When thinking of crystals and Crystallography, you will need to think much bigger. And further – even to Mars and back.

Crystallography refers to the branch of science that is concerned with structure and properties of crystals. The obvious examples would include cut diamonds, gemstones such as amethysts, and ‘simple’ crystals such as selenite and quartz.

But have you thought about the irritating brown scales at the bottom of your kettle? The sand in your shoes? The salt over your lamb chops or the sugar in your coffee? All crystals. From egg shells to glucose, from bugs and insecticides to additives in food – even the compounds in chocolate – all fall under the close scrutiny of Crystallography.

The breakthroughs this field of science has produced have led to almost 30 Nobel Prizes over the years.

Determining the structure of DNA by crystallography was arguably one of the most significant scientific events of the 20th century. Different diseases have been cured or slowed by medicines obtained based on crystallographic studies. These include certain cancers, HIV/Aids, Tuberculosis and Malaria. Biological Crystallography enables the development of anti-viral drugs and vaccines.

This field of science influences our daily lives in virtually immeasurable ways. Here are but a few areas of study and development Crystallography contributes to:

•   LCD displays;
•   cellular smartphones;
•   insects and insecticides;
•   additives and products in foods;
•   improved effectiveness and security of credit cards;
•   new materials to preserve energy;
•   better gasoline with less by-products;
•   identify colour pigments used in paintings from the old masters, indicating if it’s an original or an imitation; and
•   beauty products such as nail polish, sun-block, mascara and eye shadow.

Crystallography is also currently used by the Curiosity Rover to analyse the substances and minerals on Mars.

Crystals and Crystallography form an integrated part of our daily lives – from bones and teeth to medicines and viruses, from chocolates to the blades in airplane turbines. Even down to the humble snowflake.

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