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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

Kovsies reign FNB Superbowl

2007-05-10

The FNB Super Bowl took place from 26 – 30 April in Potchefstroom.

The Kovsies reigned the tournament in their respective categories.

It was an absolute mega Intervarsity. The following tournaments took place in which Kovsies was represented.

Senior rugby tournament

The Shimlas won their first game against TUT 33-0

In the Semi-final Shimlas lost against Pukke 17-8.

The Shimlas played for third and fourth place against Tukkies and won the game 41-19. Which secured them the third place in the tournament.

The following teams participated in the tournament

Pukke, UJ, Shimlas, Tukkies, Maties, NMMU, TUT, UCT

SA Students team

The following Shimlas were selected for the SA student games:

Steph Roberts (prop)

Drikus Strydom (hooker)

Philip Steyn (lock)

Marlin Ruiters (Scrumhalf)

Marcel du Toit (flyhalf)

Pharmaton Junior Rugby Tournament

The Kovsies u/21 & u/19 teams won their respective tournaments. It is a wonderful accomplishment for the University. The following teams took part in the tournament: Kovsies, Pukke, Tukkies and UJ.

u/21 results

Won Pukke 12-11

Won UJ 22-18

Won Tukkies 47-16

u/19 results

Won UJ 9-8

Won Pukke 25-13

Won Tukkies 25-16

Hostel Rugby Tournament

Reitz and Armentum represented Kovsies. These two teams played against each other in the final which Reitz won 47-0. To have both our hostel teams in the final is an outstanding accomplishment for Kovsies.

The following Universities took park: Kovsies, Pukke, Tukkies and UJ

Reitz results

Won Sonop (UJ): 27-7

Won Patria (Pukke): 11-10

Bastion (Tukkies): withdraw

Won Armentum in the final: 47-0

Armentum results

Won Overs (Pukke): 15-7

Won Afslaan: 49-12

Won Boekenhout: 43-0

Lost against Reitz in the final: 47-0

Hostel Soccer

Veritas represented Kovsies and won Kiaat from Tukkies in the final with 3-1 after a penalty shoot-out.

Hostel Netball

Vergeet-my-nie and Emily Hobhouse represented Kovsies. Vergeet-my-nie lost in the final against Wanda from Pukke17-14.

Hostel Cricket

Vishuis lost in the final against Villagers from Pukke with 5 wickets.

Hostel Hockey

Wag-‘n-Bietjie and Vergeet-my-nie represented Kovsies. Unfortunetly none of them went through to the finals.

We won most of the games against the strongest Universities in the country is an outstanding accomplishment for Kovsies.

Compiled by

Ansu Colditz

Rugby Manager

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