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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

TEDxUFS conference - the highlight of the university’s innovative calendar

2015-08-11

Mmusi Maimane, leader of the Democratic Alliance with co-organisers of TEDxUFS Bonginkosi Leeuw and Lerothodi Molete after his inspirational talk at the event.
Photo: Curtis Nhlamulo Mashimbye

This year’s TEDxUFS speaker lineup persuaded the audience unanimously to question the nature of reality. The Albert Wessels Auditorium on the Bloemfontein Campus was packed with about 200 attendees on Saturday 1 August 2015.

Speakers shared a multiplicity of profound theories and inquisitions, challenging society in general to think out of the box. Melody Mentz, Gil Oved, Ricardo Peach, Pamela Nomvete, Pepe Marais, Mmusi Maimane, Brian Kally, Pieter Geldenhuys, Philippa Tumubweinee, Gareth Cliff, and Angelo Mockie took on to the stage to tackle multidisciplinary concepts as part of the broad ‘Ask Why’ theme.

Innovation mouthpieces share their worldview

Pieter Geldenhuys, the internationally-renowned futurist and Director of the Institute for Technology Strategy, and Innovation proposed that we change our mindsets by neglecting predictability. “We need to look at different models to understand the world around us,” he said. He challenged the linear and familiar ways humans make sense of the universe.

Speaking to the dire need for transformation, Philippa Tumubweinee suggested that university spaces merge with the communities they serve in terms of policies, social atmosphere, and physical structure. Tumubweinee is a senior Lecturer at the Department of Architecture at our university, and co-Founder and Director of Izuba In Africa architects.

“Only we can give permission to be intimidated; so don’t give in,” said Brian Kally, the CEO of Arrow Logistics (Pty) Ltd. Kally underscored the power of believing in our individual ideas.

Guidelines from TEDxUFS organisers

Bonginkosi Leeuw: “If you take your brainchild and implement it, and make it a reality, that’s when you can achieve great things, not before that.”

Lerothodi Molete: “You should ask questions; the moment you ask the question you will understand more.”

Real-time social media feedback

These are some of the comments audience members published on Twitter at the event:

IG: mispertanzy ?@MiesperTanzy Aug 1

A huge shout-out to @TEDxUFS for hosting such a great conference!The team has really made the event an unmissable one on the UFS calendar.

Celebrabitur? ?@HatsuMphatsoe Aug 1

Proximity that allows us to experience our broader society. Truly engaged by Philippa Tumbweinee's talk! @TEDxUFS

TEDxJohannesburg ?@TEDxJoburg Aug 1

A big shoutout to @TEDxUFS from for a fantastic event. Wish we were there.

RicardoPeach ?@ricardopeach Aug 1

Africa is rich with potential #TEDXUFS @MmusiMaimane Yes!

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