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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

Summer programme a first outside Austria

2012-12-06

Mr Derek Hanekom, Minister of Science and Technology
Foto: Johan Roux
05 Desember 2012

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People often fight about their differences, like skin colour, religion and more. “These differences are minute. We must celebrate our common ancestry and commit ourselves to a common destiny. Your work can make a difference.” This is according to Mr Derek Hanekom, Minister of Science and Technology.

He opened the Southern African Young Scientists Summer Programme (SA-YSSP) at the Bloemfontein Campus on Sunday 2 December 2012. The UFS is the first institution outside Austria to host the Summer Programme. A total of 19 young researchers from 17 countries will be hosted by the UFS until 28 February 2013. Researchers in the programme are, among others, from South Africa, Egypt, China, Italy, Sweden, Iran, Hungary, India, the USA and Indonesia.

The programme will form part of an annual three-month education, academic training and research capacity-building programme jointly organised by the International Institute for Applied Systems Analysis (IIASA), based in Austria, the National Research Foundation (NRF) and the Department of Science and Technology (DST). IIASA is an international research organisation that conducts policy-oriented scientific research in the three global problem areas of energy and climate change, food and water and poverty and equity. South Africa’s engagements with IIASA, specifically with regard to the SA-YSSP, relate primarily to the DST’s Ten-Year Innovation Plan.

Mr Hanekom spoke about the impact the growing global population, which is expected to grow from 7 billion in 2012 to 9 billion in 2050, has on natural resources. “We use purified water to flush our toilets while other people do not have clean drinking water. We cannot carry on like this. Somewhere it must stop, if we do not want to be responsible for the 6th great extinction. We must know how our systems impact on each other.

“We can do things differently and better and should endeavour that other people enjoy luxuries we take for granted,” he said.

He urged the researchers to believe that they can make a difference, share knowledge and translate the knowledge into plans.

Prof. Dr Pavel Kabat, Director/CEO of IIASA, said the summer programme was presented outside Austria for the first time, with plans to expand to Brazil and China in future. Twenty countries are represented on the IIASA board, with more than 3 000 researchers associated with the organisation.

IIASA was launched in 1972 in the days of the Cold War as a “science bridge” between the West and the Soviet Union. It served as a “think tank” for various issues that needed to be resolved. Its mission was reconfirmed after the fall of the Berlin Wall in 1989.

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