Latest News Archive

Please select Category, Year, and then Month to display items

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

Open Day attracts thousands

2012-05-02

Campus was abuzz with prospective students and their parents finding out what Kovsies has to offer.
Photo: Kaleidoscope Studios
1 May 2012

“It is easier to pass Grade 12 today because we don’t have a standard. However, at the University of the Free State, standards are important.”

This was Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS’ message when he addressed a packed Callie Human Centre on the Bloemfontein Campus during this year’s Open Day.

“This university is the jewel of the country. Here at Kovsies we take academic standards seriously. You must know who you are in a place where academic standards are extremely important. Anyone can obtain a degree, but here you can get more than a degree. You get an education,” he said to the more than 5 000 learners and parents from across the country.

“It is not only important that you study here in South Africa, but also in other countries. That is why our students study all over the world. You must think out of your comfort zone, have a big heart, achieve great heights and show everyone that you are a Kovsie.

But, it is not all about studying – it is also about being human and reaching out to others. When you come to this university, you will also do other things that will make you proud of being a Kovsie.

Quality looks for quality. Therefore, work hard and study hard because you need to be at a good university,” he said.

The programme consisted of, among others, a spectacular laser show, a performance by Bobby van Jaarsveld and special messages from DW Bester and Sannah Mokone, Rhodes Scholars currently studying at Oxford University in the United Kingdom.

In a pre-recorded message DW, a Ph.D. student in Mathematical Statistics, encouraged prospective students to work hard and persevere. Sannah, doing a Master’s degree in African Studies, said she believes in the future of the African continent. “I believe in our future students and know you can make it.”

Prof. Jansen also introduced some of the university’s recent student achievers such as Jurie Swart, regional winner of the Corobrik Architectural Student of the Year Award; Farzana Samuel, named by the Association of South African Quantity Surveyors (ASAQS) as the most outstanding student in quantity surveying for 2012; and Sibusiso Tshabalala, one of Google’s Top 10 Young Minds.

Richard Chemaly, President of the Central Student Representative Council (CSRC), said that, by coming to Kovsies, prospective students would become the best person they can be. “We have over 70 student organisations to help you take part in student life activities. So, make use of these opportunities,” he said.

The programme concluded with an introduction to the seven faculties by the respective deans.

The estimated 7 000 prospective students and their parents also had the opportunity to visit faculties and the stalls of residences.

Back

Economic and Management Sciences

Education

Health Sciences

The Humanities

Law

Natural and Agricultural Sciences

Theology and Religion

Open Distance Learning

Business School

We use cookies to make interactions with our websites and services easy and meaningful. To better understand how they are used, read more about the UFS cookie policy. By continuing to use this site you are giving us your consent to do this.

Accept