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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

Discovery in Scorpius constellation may signify clean energy for Earth

2017-01-23

Earlier this year, a group of international astronomers
announced the discovery of an exotic binary star system,
AR Scorpii. The system is in the Scorpius constellation.
Photos: Supplied

See article on Nature’s website

In future, stargazers and astronomers will look at the Scorpius constellation near the Milky Way with new eyes. Earlier this year, a group of international astronomers announced the discovery of an exotic binary star system, AR Scorpii. The system is in the Scorpius constellation.

Prof Pieter Meintjes, researcher in the Department of Physics at the University of the Free State (UFS), worked with four colleagues on what he describes as a “wonderful discovery”. This sensational discovery, which could lead to the production of cleaner energy on Earth, will be published in the research journal, Nature, early in 2017.

Model developed to interpret new set of measurements
The exotic binary star which was discovered consists of a red dwarf and a white dwarf revolving around each other every 3,5 hours. The binary system showed very prominent pulsations of 117 and 118 seconds respectively. The pulsations can be explained by a bundle radiation produced by the white dwarf star.

“These new observations have shown that the radiation is strongly polarised, a sign that we are dealing with synchrotron radiation here. Synchrotron radiation is produced by electrons accelerated to extremely high energy levels in the magnetic field of the white dwarf star,” says Prof Meintjes.

He developed a theoretical model to interpret a new set of measurements that was taken by the 1,9 m telescope and the 10 m SALT telescope at the South African Astronomical Observatory (SAA0).

Totally unique phenomenon could contribute to energy production on Earth
“I further indicated that the interaction between the magnetic fields of the white dwarf star and the red dwarf star induces secondary processes that specifically describe the behaviour of the radiation in the radio band and infrared band accurately. AR Sco is the first white-red dwarf binary system of which all the pulsated radiation could be explained by the synchrotron process, which is totally unique,” says Prof Meintjes.

According to Prof Meintjes, the value of the model lies in the fact that the processes which produce the radiation in AR Sco, can also be applied to produce energy on Earth.

Plasma reactors are based on roughly the same processes which apply in AR Sco, and with refining, it could be utilised to generate electricity in future. This will be much cleaner than nuclear energy.

The model developed by Prof Meintjes explains all the radiation in the system – from radio waves to X-rays – in terms of electrons accelerated to extremely high energy levels by electric fields in the system, which then produce synchrotron radiation over a very wide band of the electromagnetic spectrum.

Prof Meintjes is currently working on a follow-up article examining the evolution of the AR Sco, in other words, the origin of such a unique system and the final state towards which it is evolving. “My vision for the immediate future is therefore to develop a model for the evolution of the source concerned,” he says.

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