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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

Middle East activists speak about peace on the Bloemfontein Campus

2012-03-15

Bassem Eid (left) and Benjamin Pogrund discuss the situation in the Middle East.
Photo: Johan Roux
15 March 2012

Peace is a big word in the Middle East, particularly amongst Israelis and Palestinians. After years of conflict, people yearn for peace; they want an end to the killings and the uncertainty. The problem is that both sides are actively doing things that undermine the prospect of peace. There is also double talk, lies and evasion with each side pointing fingers. This was the word from Benjamin Pogrund, an Israeli peace activist, addressing staff and students on the Bloemfontein Campus of the University of the Free State. He and fellow peace activist Bassem Eid, a Palestinian, visited the campus to speak about the situation in the Middle East.

Both men agreed that peace efforts were hindered by the Israeli and the Palestinian leaders. According to Pogrund, neither the Palestinians, nor the Israelis are leading the way in accepting that the conflict must end.

“Both Israeli and Palestinian leaders say let us get together with no pre-conditions. Then the Israeli leaders say, Jerusalem we cannot share, that is not for negotiation. And, they say to the Palestinians you must recognise Israel as a Jewish state. So, what they say is unless you agree to these pre-conditions there can be no talks without pre-conditions.

“And the Palestinians in turn say the settlement construction must cease immediately, and unless that happened, there is no point in meeting. And they say we will never acknowledge you as a Jewish state so do not even bother talking about it. And we insist on the right of return of Palestinian refugees. So they also say unless you acknowledge these pre-conditions there is no point in meeting with our pre-conditions. So as you can gather each side blames the other side, each side points the finger and says you are responsible for the lack of progress.”

Pogrund said both the Israelis and the Palestinians could demand legitimacy in that part of the world.

“Both Jewish and Arabs can say we have history on our side. We have religion on our side, culture.”

To compare Israel to Apartheid South Africa is wrong, he said.

“It is an occupation, it is repression, but it is not Apartheid.”

Eid, who is the director of the Palestinian Human Rights Monitoring Group, said the Palestinians were close to having a complete independent Palestinian state from 1994 to 1999.

“But in one rocket former Israeli Prime minister Ariel Sharon destroyed it.”

He said Israel’s disengagement from the Gaza Strip in 2005 did not bring political unity.

“We, the Palestinians, were supposed to start building the infrastructure of the Gaza Strip but unfortunately Hamas started dancing on that Israeli disengagement and considered it as their own success because of their military resistance against the occupation.” He also said Hamas is satisfied with its hold in the Gaza Strip and Fatah is also very satisfied with its hold in the West Bank. According to Eid, it is convenient for the Israelis that the Palestinians are separated.

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