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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

UFS boasts with most advanced chemical research apparatus in Africa

2005-11-23

Celebrating the inauguration of the NMR were from the left Prof Frederick Fourie (Rector and Vice-Chancellor of the UFS), Dr Detlef Müller (Development Scientist and Manager: Africa and Asia of Bruker in Germany, the supplier of the NMR), Prof Jannie Swarts (head of the head of the Division Physical Chemistry at the UFS) and Prof Herman van Schalkwyk (Dean: Faculty of Natural and Agricultural Sciences at the UFS). Photo: Lacea Loader

UFS boasts with most advanced chemical research apparatus in Africa

The University of the Free State’s (UFS) Department of Chemistry now boasts with some of the most advanced chemical research apparatus in Africa after the latest addition, a nuclear magnetic resonance (NMR) spectrometer, was inaugurated today by the Rector and Vice-Chancellor, Prof Frederick Fourie. The NMR is used to analyse molecular structures.

Last month the Department of Chemistry celebrated the installation of the most advanced single crystal X-ray diffractometer in Africa. The diffractometer provides an indispensable technique to investigate among others the solid state of compounds for medicinal application.

“Three years ago the UFS executive management realised that, if we want to build a university of excellence, we should invest in research. We started to think strategically about chemistry and decided to bring the apparatus at the Department of Chemistry on a more competitive standard. Strategic partnerships were therefore secured with companies like Sasol,” said Prof Fourie during the inauguration ceremony.

“The installation of the NMR symbolises the ability of the UFS to turn academic areas around. I hope that this is the beginning of a decade of excellence for chemistry at the UFS,” said Prof Fourie.

”The catalogue value of the Bruker 600 MHz NMR is approximately R11 million. With such an advanced apparatus we are now able to train much more post-graduate students,“ said Prof Jannie Swarts, head of the Division Physical Chemistry at the UFS.

”The NMR is the flagship apparatus of the UFS Department of Chemistry that enables chemists to look at compounds more easily at a molecular level. Research in chemistry is critically dependent on NMR, which is a technique that can determine the composition of reactants and products in complicated chemical reactions, with direct application is most focus areas in chemistry,“ said Prof Swarts.

”Parts of the spectrometer consists of non-commercial items that were specifically designed for the UFS Department of Chemistry to allow the study of unique interactions in e.g. rhodium and platinum compounds,” said Prof Swarts.

According to Prof Swarts the NMR enables chemists to conduct investigations on the following:

To evaluate for example the complex behaviour of DNA in proteins as well as the analysis of illegal drugs sometimes used by athletes.
It provides an indispensable technique to investigate compounds for medicinal application for example in breast, prostate and related bone cancer identification and therapy, which are currently synthesised in the Department of Chemistry.
It can also be applied to the area of homogeneous catalysis where new and improved compounds for industrial application are synthesized and characterised, whereby Sasol and even the international petrochemical industry could benefit. This analytical capacity is highly rated, especially in the current climate of increased oil prices.
The NMR can detect and identify small concentrations of impurities in feed streams in the petrochemical industry, e.g. at Sasol and also the international petrochemical industry. These minute amounts of impurities can result in metal catalyst deactivation or decomposition and can cause million of rands worth in product losses.
It is indispensable for studying the complexity of samples that is non-crystalline. These materials represent the vast majority of chemical compounds such as solvents, gasoline, cooking oil, cleaning agents and colorants as examples.

According to Prof Swarts the general medical technique of MRI (magnetic resonance imaging) in use at larger hospitals, is based on NMR technology.

”The NMR apparatus enabled the Department of Chemistry to characterise complex molecules that were synthesised for the multi-national company, FARMOFS-PAREXEL, and to negotiate research agreements with overseas universities,” said Prof Swarts.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
22 November 2005

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