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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

Meet the person behind the new #FaceOfFacebook

2016-05-19

Reuben “R” Davids

The votes have been counted, and we have a winner! After much excitement and a fairly close contest, Reuben “R” Davids emerged victorious from the top five contestants selected by our panel of judges. We chatted with the vibrant and enthusiastic Mr Davids to get a sense of the person who will be our Facebook ambassador for the next year.

What does the “R” stand for?

“Interestingly, some also know me as Vuyo. It's not a name on my birth certificate or anything; I just really like it. And I also coincidentally found out that it means “joy/happiness”, and I do enjoy being happy.”

What is your field of study, and how far along are you?

“I am pursuing a career in the economics field as a third-year BCom Accounting student in the Faculty of Economic and Management Sciences here at the University of the Free State.”

Are you originally from Bloemfontein?

“Yes, born and bred. I've been a Bloem Kid since day one.”

How is it that you ended up here, studying at the UFS?

“The UFS has always been one of my favourite universities. During my high school period, I was constantly exposed to people from my neighbourhood as well as schoolmates who performing excellently here at UFS, and it didn't go unnoticed. So I have always been drawn to the prestige that UFS carries.”

Which residence are you in, and what do you enjoy most about res life?

“I currently stay at home with the family, but for my first 2 years of study I resided at ConLaurês. What I enjoyed the most about res life is the freedom and independence that you get. It also enables one to participate in campus life much easier. It actually helps one grow and mature into the adult you're supposed to become with all the challenges and responsibilities that you're faced with.”

What do you hope to accomplish during your term as the #FaceOfFacebook?

“I enjoy the art of presenting (as well as being an MC), and being the #FaceOfFacebook will enable me to exercise that skill. Also, my interaction skills will be exercised. That being said, I would like to have those skills developed further by the end of my term as #FaceOfFacebook.”

What is your motivation in your studies, in taking part in this contest, and in life?

“I am an adrenaline junkie. I like taking on challenge; so what I normally do is I set a certain goal for myself and then take on the challenge to achieve that goal. That's my number one motivating factor. And I think I'm also inspired by the failures and successes of myself and of those around me.”

Reuben has already been featured in a #PeopleOfKovsies post on Facebook, and appeared in his first Facebook video covering the Open Day on our Bloemfontein Campus.

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