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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

“Deploy your education and not connections,” Chancellor tells graduates

2012-05-16

Qwaqwa Autumn Graduation
Photo: Thabo Kessah
16 May 2012

Our Qwaqwa Campus conferred 424 degrees, diplomas and certificates at this year’s autumn graduation ceremony held on 12 May 2012.

Amongst the degrees conferred were two doctorates in Polymer Science, two Master’s of Arts in Geography and African Languages, respectively, five Master’s of Science degrees in Physics (3) and Polymer Science (2) and 37 honours degrees in Education, Zoology, Physics, Botany and Polymer Science.

In their congratulatory messages, both the Vice-Rector: Institutional Affairs, Prof. Teuns Verschoor, and the Chancellor, Dr Khotso Mokhele, challenged the graduates to start focusing their attention beyond their graduation on what they both referred to as “the real world”.

“Graduation ceremonies are a fantastic event, but you must never lose sight of appreciating the support given by those around you,” said Dr Mokhele.

“This hall was full of shouting and yes, you must bask in that glory, knowing that you have achieved part of your goals. Yes, this is your moment, so shine. You deserve it. You have earned it.”

“However, this noise also means you must go out there and face the real world. You are graduating in a model country on how people can reconcile, despite their painful and divided past. You deserve all the accolades, but that model country is disappearing before your eyes. How can you mess up what Mandela, Biko, Sobukwe, Nardine Gordimer lived and fought for? How can you mess up such a good thing?” Dr Mokhele asked of an attentive audience that included proud parents and siblings, as well as educators and learners from the Thabo Mofutsanyana District.

“Go out there and deploy your education and not your connections, as these are embedded in corruption. Go out there and help get rid of the patronage system where hard-workers are more likely to be constructively dismissed as they stand in the way of those with corrupt tendencies. Save this country from becoming another Zimbabwe. Let us do whatever it takes to save this country. Let these matriculants who are here today want to walk that red carpet with pride in the next few years,”,said Dr Mokhele.

Dignitaries in attendance included the former Chief Minister of the former Qwaqwa homeland, Dr T K Mopeli; the Executive Mayor of the Dihlabeng Local Municipality, Councillor Tjhetane Mofokeng; Dr SWF Moloi (Thabo Mofutsanyana Education District) and representatives from various government departments.

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