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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

Kovsie TV Launched

2015-05-06

Victor Ngubeni, Grace Thoabala, Nangamso Dlatu, Aisha Poswa, Lesego Maakamedi, Nothando Hlope, Aldene vd Merwe and Lawrence Siyoko

“We have to change our university before we can change our country.”

There is a revolution at hand, and students are requesting new and exciting platforms on which they can voice themselves. Kovsie TV aims to do just that for Kovsie students.

As a student initiative, the steam behind it is SRC Student Development and Environmental Affairs, Victor Ngubeni. He says that it is only right that it be by the students themselves. The launch saw many from the campus community gathered out of curiosity and excitement for the new venture. The evening started out as quite a classy frenzy, which had attendees clearly prepared for the level of broadcasting that the launch would showcase.

The initial idea is to increase the number of platforms where students can receive information. The Student Media portfolio, which oversees the functioning of student media platforms, aims to make Kovsie TV as autonomous as possible. As an introductory initiative, it will aid in the sharing and telling of students’ stories.

It is important to mention the preparation process that was endured by the many hopefuls who auditioned, hoping to make it as one of the Kovsie TV presenters. For more than three weeks, the panel of judges sieved through the contestants until they had just six rough diamonds. Then, for the first time, the audience met the faces that they would become familiar with from this point.

As Ngubeni stressed during his speech, Kovsie TV would not serve as propaganda machine for the SRC, as many might have asked about the relationship that could be expected between the two. The architects of Kovsie TV hope that, as a student initiative, it will inspire a new era in student activism.

When asked about the concept behind this new platform, Ngubeni informed us that, “the concept is to have a twenty-minute campus TV show highlighting what goes on around campus so that students know, and so that we can get them participating in campus life activities.”

This is a student initiative whose future will depend solely on the students themselves.

Presenters:

Nangamso Dlathu – Studio presenter

Grace Thoabala – Studio presenter

Lesego Maakamedi – Social events

Nothando Hlophe – Current affairs

Aldine van der Merwe – Culture events and Vox-Pop

Mbulelo Siyoko – Culture and Vox-Pop

Aisha Phoswa ? Sports

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