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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

ANC is not a party of the people - Mbeki

2010-08-30

“The unions in this country do not understand the political economy of South Africa. They think that the ANC is the party of the people. The ANC is the party of the black middle class. The fact that the masses vote for it does not mean they control it. The policies of the ANC favour the black middle class and the established businesses. They do not favour the working class.”

This was said by renowned economic and political commentator Mr Moeletsi Mbeki, brother of former president Thabo Mbeki, during a guest lecture he recently presented to Economics students of the University of the Free State (UFS) in Bloemfontein.

“You just have to look at the types of houses that the ANC government builds for ordinary South Africans,” he said.

“If you had a party that was a pro-working class party it would not have built these so-called RDP houses that are being built by the ANC government. The unions have all along been under the illusion that the ANC is the government of the working class and (Zwelinzima) Vavi and them are now beginning to realise that this is not the case.

“The public-sector workers are in a special dilemma. They think the ANC is their ally but at the same time they feel they are not getting any benefits out of this alliance. Therefore you are beginning to get a very acrimonious environment emerging between the public-sector unions and the government.”

Regarding the current issue of the Protection of Information Bill and the proposed media tribunal that have brought the media and the government onto a collision course, Mbeki said the ANC government was trying to muzzle the media because it wanted to safeguard corruption within government.

“The question of freedom of information is very closely linked to the rise in corruption in the government,” he said.

“What the politicians are doing is that they are trying to hide that corruption. The media in this country have been playing a very critical role in exposing cases of corruption. That is why Vavi now has bodyguards.”

He said he recently met Vavi, the General Secretary of Cosatu, surrounded by four bodyguards. He said Vavi told him that he was getting death threats because he was opposing corruption in government.

Mbeki said the economic policies of South Africa were the “worst in the world” because they benefited people who were already rich and militated against the emergence of entrepreneurs.

“In fact, one of the serious downsides of Black Economic Empowerment (BEE) is that it takes people who should normally be entrepreneurs and who should be creating new companies and new jobs, out of that space and just makes them wealthy. BEE has been a disaster because it created this massive economic inequality; it created this class of idle rich who have tons of money but do nothing,” he added.

He said the under-investment in the economy was having dire consequences in terms of unemployment and poverty. He said this, coupled with the growth of consumption that Black Nationalism was driving, was actually driving down the ability of the economy to absorb labour.

“What really lies at the bottom of our economic problems in South Africa is that we have too much of a one-party dominance of our political system. We need more competition in our political system and until we realise the policies of the ANC are not going to change,” he said.

Mbeki’s guest lecture was on the topic: Architects of Poverty: Why African capitalism needs changing.

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za
30 August 2010

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