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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

Shimlas have a bunch of fighters for a tough week, says Scholtz

2016-03-18

Scrumhalf Zee Mkhabela is one of the senior Shimla players who will have to help his team play three Varsity Cup matches within a week. Photo: Christaan Kotzé/SASPA

Luckily, he has a bunch of fighters in his rugby group to take on the week ahead, which is almost like a USSA rugby week with a lot of matches in a row.

This is what Hendro Scholtz, the Shimla coach, had to say about the upcoming Varsity Cup week, with his team playing three games within a week. His team will play against the University of Johannesburg (UJ) on 21 March 2016, after which they will face Maties in Cape Town on 24 March 2016, and then take on Pukke in the Mother City on 28 March 2016.

The schedule for the Varsity Cup series had to be adapted due to the recent unrest on campuses across South Africa.

According to Scholtz, the versatility of his players and the attitude of the University of the Free State (UFS) rugby team counts in their favour for the week that lies ahead. Several of the Shimla players can play in more than one position.

The Shimlas will travel with a group of 29 players, and will, after their match in the City of Gold, fly directly to Cape Town for their other two league matches.

“We will take six extra players (other than the 23-man squad) with us,” Scholtz said.

“One should select a group for this week that can fight, hang in there, and are able to play another match or two. It is like a USSA week where you need fighters.”

Prop Chase Morison, who was given a red card against the Central University of Technology in Johannesburg on 14 March 2016, wasn't sighted, and is available to play again. The Shimlas are still unbeaten after winning 10-9 against CUT in the FNB Stadium. Flyhalf Pieter-Steyn de Wet, who missed the game against CUT due to an injury, will be able to play against UJ.

The Kovsie Young Guns and Vishuis, the residence representative for the UFS, will also play a couple of matches in the coming week.

Fixtures:

Shimlas: 21 March: Shimlas v UJ (FNB Stadium); 24 March: Maties v Shimlas (Cape Town Stadium); 28 March: Puk v Shimlas (Cape Town Stadium).

Kovsie Young Guns: 19 March: Kovsie Young Guns v UJ (Rand Stadium); 24 March: Puk v Kovsie Young Guns (Rand Stadium).

Vishuis: 24 March: Vishuis tv Harlequins (NMMU, Rand Stadium); 26 March: Mopanie tv Vishuis (Tuks, (Wanderers Rugby Club); 28 March: Oppierif v Vishuis (UJ, FNB Stadium).

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