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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

The UFS #FaceOfFacebook

2014-11-14

At the UFS, we are committed to our Human Project, which sets the standard for good behaviour and care. It reaches internally to our students and externally to our prospective students and our communities.

And so, the Kovsies #FaceOfFacebook was born from the need to communicate with students and thus become a virtual friend. Yearly auditions are held to choose the new face representing the UFS on Facebook. The successful candidate holds the title #FaceOfFacebook for the next 12 months, attending events and filming short video clips to post on our Facebook page.

We had a quick chat with our current #FaceOfFacebook, Katleho 'Blue' Letube …

Who is Blue?

"Media mistress, fashion phenom, diva divine darling, superwoman and lover of life.
I was born in a small town called Bothaville, where my mom and her side of the family are living . I started pre-school there, moved and completed my schooling career at St. Andrew's High School (a very proud S aint) in Welkom. That is where my dad and his side of the family are living . Also, I am a proud resident of House NJ vd Merwe and I am studying Governance and Political Transformation."

How do you balance everything you do?

"It's relatively easy for me to strike a balance between my academics, social life and leadership duties, because Jesus is at the centre of all that I do. He is my guide and my strength. However, I also take it upon myself to prioritise. Although I am a '' liker of things'' , I ensure that my academics are the priority and everything else falls into place perfectly."

Are you dating someone?

"Hahaha, wouldn't you just love to know? Well, yes I am off-market. I'm completely taken and I'm happy."

What drives you?

"I always feel the urge to expand myself by working harder, smarter, stronger, and more efficiently. If there's an extra mile to go, the strength inside me draws out the willingness and ability to go that extra mile."

What is it like being the #FaceOfFacebook?

"I have been privileged to be entrusted with this duty and I carry it out with pride and passion. Being the #FaceOfFacebook means you get to meet a new face on campus almost every day, because people recognis e you and want to know you better. This opportunity has opened many doors for me and has equipped me with skills that have allowed me to grow as an individual. Therefore I will forever be grateful."

Where are you going to be in five years from now?

"Five years from now I would like to see myself as a better person both personally and professionally, in a respectable and reputed position earned through my hard work and skills. However, do not be surprised if you see me as a presenter on Vuzu.TV."

Advice to prospective students?

"Do not be that pupil who enrolled at this awesome institute and never takes advantage of its kindness. The University of The Free State is an institution that offers an excessive amount of opportunities to students. Step up and get out of your comfort zone. See an opportunity, seek the opportunity and cease it. You are at a university that provides you with a platform for you to grow."

What's your favourite colour?

My favourite colours are Black, White and Blue – hahaha!!

Kovsies can keep in touch:

Facebook: Katlego Blue Letube
Twitter: @Princess_blue31
Instagram: katlegoletube

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