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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 student and reigning Miss Lesotho en route to Miss World 2015

2015-11-03

Relebohile Kobeli - the beauty queen of Lesotho

Relebohile Kobeli was crowned Miss Lesotho 2015 earlier this year, and is now en route to Miss World International 2015 in China to represent the mountainous Kingdom. The beauty pageant, which takes place between November and December, will see contestants from over 150 countries contending for the title.

The nineteen-year-old second-year Geography and Environmental Management student at the University of the Free State (UFS) also won Miss Lesotho in 2014. She holds other titles, such as Miss Outeniqua 2014, and First Princess Face of Lesotho 2013.

What would it mean to be the first from Lesotho to sit on the Miss World throne?

I believe that it would be a turning point for pageantry in Lesotho. We are one of the few countries that do not fully recognise pageants, and the value they add to the tourism industry. Winning the throne would be putting into practice the theory that we, as beauty queens in Lesotho, always practice what we preach.

Since beginning this Miss World contest, in what way have you reached out to your community through the Beauty with a Purpose project?

My Beauty with a Purpose project focuses mainly on introducing and helping start up sustainable projects in communities. I wanted to move away from giving people donations to giving them the skills to ensure their long-term livelihood.

What skill sets do you possess that are essential to succeeding as an international first queen?

I am a very creative individual who thinks on her feet. That is important for me because, when you are far away from home, should things go wrong, there's no room for panic. I am sociable and human-centered, I relate to different people, regardless of cultural differences, and, as an international queen, it is important to be appreciative of others’ way of life, regardless of how different it is are from your own.

Rolene Strauss, the current Miss World, stated her ambition to capitalise on promoting forgiveness, hope, and unity during her tenure. What are you hoping to achieve, given the chance as her successor?

I would definitely speak about self-reliance among young women and the youth at large. I come from a country where not everyone is lucky enough to get a job. In such cases, young men and women fall into crime, young women become victims of sexual abuse or prostitution, and, although one may argue that that is self-reliance, is it sustainable? Is it not escaping one fire to jump into another? It is important for me to represent every girl who has ever had a dream. I am spreading the message of possibilities when the world is yelling "Impossible!"

What has been the highlight of your term as Miss Lesotho?

My greatest highlight was finding myself through service to others. I discovered that the more I invest in myself, the more of me I can give and share.

The Miss Lesotho 2016 competition is around the corner, what words of wisdom would you like to share with hopefuls?

Pageantry is not all about pretty dresses and tiaras. It is hard work. Always be humble, and remember that, whatever the outcome, it is your life's journey. You are destined for greatness. Don't deny yourself that privilege.

In your experience, what is the Kovsie feeling referred to in the maxim “Only a Kovsie knows the feeling”?

It is the desire to want to be great, the motivation to live to my full potential.

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