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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

Alumni in the financial sector: money talks!

2016-12-26

Marina Marinkov, Economist at the
International Monetary

Evangelina Nailenge, General
Manager: Investment Institutions at
Namibia Financial Supervisory Authority.

Vuyelwa Vumendlini, Chief Director:
Global and Emerging Markets, National
Treasury.

Prof Meshach Azaikpono, Professor of
Development Finance, University of
Stellenbosch.

Anton Nicolaisen, Provincial Head for
the Free State Province, Standard Bank.

Where are they now?

On good days, most of us battle to set our personal finances straight, let alone be responsible for a large enterprise. So we are extremely proud of the well-trained and talented Kovsie alumni who fill prominent shoes. Operating mostly away from the public eye, they make decisions to improve the economy on various levels. It is heartening to know that the UFS contributes to financial matters and training all across the globe.

Marina Marinkov

Courses: BCom (Economics), BCom Hons (Money and Banking), and MCom (Economics) (2000-2004)
Current position: Economist at the International Monetary Fund
Biggest career obstacle: I once worked for an organisation with poor leadership which negatively affected employee morale and job performance. It still proved to be a great learning experience, though. Bad bosses can teach us powerful lessons.
Best career advice: Stop doubting yourself, work hard and be humble.
Fondest memory of UFS: Time spent on campus with my classmates, whether studying for finals at the library or just catching up between classes. The UFS was also my first employer and I have plenty of wonderful memories with colleagues at the Department of Economics.

Evangelina Nailenge

Courses: BCom Hons (Money and Banking) MCom (Money and Banking) (2005-2006)
Current position: General Manager: Investment Institutions at Namibia Financial Supervisory Authority
Biggest career obstacle: At times, being one of the youngest requires you to work twice as hard to earn your voice and cue at the decision-making table.
Best career advice: “Whatever your hand finds to do, do it with all your might, for in the realm of the dead, where you are going, there is neither working nor planning nor knowledge nor wisdom.” Eccl. 9:10
Fondest memory of UFS: Walking around the campus. Its well-manicured lawns and gardens had a calming effect in the midst of academic pressures. I will forever treasure the moment I first saw my name engraved in the walls of FGG, as the best postgraduate student for both 2005 and 2006.

Vuyelwa Vumendlini

Course: BCom Hons (Economics) (1996-1999)
Current position: Chief Director: Global and Emerging Markets, National Treasury
Biggest career obstacle: Doubting your own capabilities.
Best career advice: The sky is the limit, go for it all out, but most importantly, do something that you are passionate about it. It makes your work much more meaningful.
Fondest memory of UFS: Working as a tutor in my honours year and being able to help other students. I also enjoyed hanging out at Mooimeisiesfontein on Saturday afternoons.

Prof Meshach Azaikpono

Course: PhD in Economics (2004-2008) “The Depth of Financial Integration and its Effects on Financial Development and Economic Performance of the Southern African Customs Union Countries”. He received the Founders’ Medal for the best PhD dissertation in Economics in South Africa.
Current position: Professor of Development Finance, University of Stellenbosch.
Biggest career obstacle: I was fortunate to never have experienced a major career obstacle.
Best career advice: Pursue and focus on your passion.
Fondest memory of UFS: Being a part-time student, I had very limited interaction with the broader university environment. But I really enjoyed the support provided by the library staff and the staff from the Department of Economics. It was always like coming to see friends.

Anton Nicolaisen

Course: BEcon (1986-1989), MBA (1999-2003)
Current position: Provincial Head for the Free State Province, Standard Bank
Biggest career obstacle: Earlier in my career, I fell into a comfort zone and had to acquire the willingness to change.
Best career advice: Continuously challenge yourself to be the best possible person you can be, and run your own race. Learn through difficult times, and be open to change.
Fondest memory of UFS: Although I was not the biggest academic, I enjoyed interacting with lecturers … their stories and unique characteristics. Back then, I interpreted some as funny or awkward, only later did I realise how much I had learned from them. And of course, I’ll always remember the team spirit at athletics meetings and intervarsity.

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