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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

International Year of Crystallography attracts science experts from across the globe

2014-10-13

Video: Discover what Chrystallopgraphy can do for you
Video: Celebrating Crystallography: An Animated Adventure

Summit programme

The third world summit in the International Year of Crystallography (in Africa) will be hosted by the UFS Department of Chemistry here on the Bloemfontein Campus. Prof André Roodt, Head of the Department of Chemistry, was elected as the President of the European Crystallographic Association in 2012. Earlier this year he unveiled the Max von Laue 'Plaque' in Posnan, Poland.

The Pan-African Meeting of the International Year of Crystallography consists of a congress and summit. The details are as follows:

Congress
12–15 October 2014
CR Swart Senate Hall, UFS Bloemfontein Campus

Summit
15–17 October 2014
CR Swart Senate Hall, UFS Bloemfontein Campus
Summit opening: Wednesday 15 October 2014 at 14:00 in the CR Swart Senate Hall

This event will be opened and attended by:
•   the UFS Rector and Vice-Rector – Profs Jonathan Jansen and Corli Witthuhn;
•   the acting Director-General of the Department of Science and Technology – Dr Thomas Auf der Heyde;
•   the acting CEO of the National Research Foundation – Dr Gansen Pillay;
•   the UNESCO Vice-Director for Science Extension – Dr Jean-Paul Ngome-Abiaga (Paris, France);
•   the representative of the Executive Committee for the International Union of Crystallography (IUCr) – Prof Santiago Garcia-Granda (Oviedo: Spain);
•   the marketing director of the IUCr – Prof Michele Zema (Pavia, Italy);
•   the President of the European Crystallographic Association (ECA) – Prof André Roodt, who will officially open the summit on Wednesday 15 October 2014 from 14:00–15:30.

Presenters from across Africa and Europe will deliver papers at this event which will be attended by more than 100 delegates from twenty-plus countries, including Spain, France, Italy, Croatia, Germany, Russia and India.

Numerous crystallographic research areas will be covered. This includes:
•   powder diffraction,
•   small molecule crystallography,
•   biological crystallography,
•   industrial crystallography,
•   surface crystallography,
as well as techniques such as
•   electron microscopy and
•   synchrotron work.

“At this event we hope to establish an African Crystallographic Association,” said Prof Roodt.

The United Nations declared 2014 as the International Year of Crystallography. It was recently officially opened at the UNESCO headquarters in Paris, France, by the Secretary General of the UN, Ban Ki-moon.

The International Year of Crystallography celebrates the centennial of the work of Max von Laue and the father and son, William Henry and William Laurence Bragg. More generally, it celebrates what crystallography can do for humanity – which proves to be a significant amount.

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