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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

Culture contributes to success of UFS rugby teams

2015-12-15

The Sevens team of the University of the Free State followed in the footsteps of the Shimlas when the team was crowned national champion. The Kovsies Sevens team beat Tukkies April in the final of the Varsity Sevens tournament. Photo: Supplied.

The University of the Free State (UFS) Rugby Club has succeeded once again in creating a culture of values.

Marius van Rensburg, Chairman of the UFS Rugby Club, believes this was one of the reasons why Kovsies had so many rugby successes this year.

The UFS knows that money, which is more abundant at bigger universities, won't change the club into a rugby force, but "there is something special here," he said.

Van Rensburg added that the success of Shimlas, who won the Varsity Cup for the first time, also helped to build a winning culture.

Seven finals

Seven of the UFS Rugby Club's teams played in finals during 2015.

Shimlas beat the Pukke in the Varsity Cup final at Shimla Park on the Bloemfontein Campus.

The Kovsie Young Guns (against Tukkies) and Vishuis (Mopanie from Tukkies) got stuck in Bloemfontein in Varsity Cup finals.

The Shimlas won Section B of the USSA tournament in Johannesburg (against Madibaz in the final).

A strong Irawa rugby team beat Shimlas in the City Cup.

The Kovsie Sevens team was crowned as the Varsity Champions in Cape Town after beating Tukkies in the final. The team was beaten by Maties in the final of the USSA Sevens tournament in George.

Shimlas lays foundation

According to Van Rensburg, the Varsity Cup triumph by Shimlas laid a good foundation.

“After what happened in the Varsity Cup, the winning culture kind of washed over the other teams,” he said.

He also thinks the 2015 successes didn't happen overnight, but that the club managed to bring back good values. He feels that Franco Smith, the former Shimlas coach who is the Cheetahs’ current coach, also played an important part.

Greater pressure in 2016

In 2016, the UFS's rugby teams will have a greater target on their backs.

Van Rensburg agrees that there will be greater pressure, but the structures are in place.

He feels that Varsity Cup success goes together with a touch of luck, of which Shimlas had some this year.

“Looking at the draw, Shimlas will play their first two matches away against Ikeys and Tukkies. Therefore, after two matches, one might have no league points, and that would place the team under immediate pressure.”

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