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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

“Breakthroughs depend on people believing in their own ideas”

2015-07-23

TED is a renowned international non-profit organisation dedicated to disseminating “ideas worth spreading” in the form compelling talks lasting up to 18 minutes.

Lerothodi Molete’s vision is to witness the youth of Bloemfontein emerge at the forefront of technological, scientific, and entrepreneurial innovations in both South Africa and the global arena.

Molete and Bonginkosi Leeuw are the organisers of TEDxUFS. Their duty is centered on inspiring people to believe in, and express, their ideas. These University of the Free State students have taken it upon themselves to inspire the youth to “push the boundaries of society.”

The second TEDxUFS event to be hosted by the university presents a unique opportunity for students, staff members, and the general public to mingle with influential speakers from across various disciplines.

Details of the event:

Date: Saturday 1 August 2015

Time: 08:00- 18:00

Venue: Albert Wessels Auditorium, Bloemfontein Campus

The keynote speakers include: Mmusi Maimane (Federal Leader: Democratic Alliance), Gareth Cliff (Radio personality: Cliff Central), Pieter Geldenhuys (Futurist), Brian Kally (Director: Arrow Logistics), Jonathan Jansen (Vice-Chancellor and Rector: UFS), Ricardo Peach (Director: Vrystaat Arts Festival, Pamela Nomvete (Former actor and writer), Gil Oved (Founder: Creative Counsel), Pepe Marais (CEO: Joe Public), Angelo Mockie (Senior Officer: Student Affairs and musician), Philippa Tumubweinee (Senior Lecturer in Architecture: UFS), and Melody Mentz (Psychology Senior Professor: UFS).

The reason behind the #AskWhy theme

"Why is a small word but it’s a quick, broad, sharp and abrupt one,” explains Leeuw. “It is the chosen word of the non-conformist, the defiant, and the visionary. It is a confrontational word. It challenges what is thought to be impossible.”

The ability to interrogate reality is what society and economies are built on. The absence of the fear to question encourages the capacity to progress.

Motivating young people to follow their dreams is the reason why the TEDxUFS team is persistent in their endeavours. Molete believes that, in order to change anything, people need to ask why.

Background of the innovation powerhouse called TED(x)

TED is a renowned international non-profit organisation dedicated to disseminating “ideas worth spreading” in the form compelling talks lasting up to 18 minutes.

In 1984, it was introduced as a conference exploring Technology, Entertainment, and Design. Three decades later, TED covers a wide variety of topics of global significance, reflecting the contemporary era in more than 100 languages.

TEDx events are under the TED umbrella. These events are organised independently, and create a platform for deliberating on local matters. The programme assists communities, organisations, and individuals to stimulate critical dialogue.

On 25 July 2014, the UFS hosted its inaugural TEDxUFS conference at the Odeion theatre on the Bloemfontein Campus, where eleven speakers addressed an audience of 150 people on interdisciplinary topics ranging from economics to entrepreneurship, technology, art, design, and theology.

This year, 200 seats will be available for innovative revolutionary individuals in search of inspiration.

Tickets are available at 0619284253 / 079 381 4126. Prices: R80 (Student/scholars) and R350 (Public/staff)

LINKS:

Lerothodi Molete- http://whoswho.co.za/lerothodi-molete-742022

Bonginkosi Leeuw- https://www.ted.com/tedx/events/10499

TEDxUFS- http://kovsielife.ufs.ac.za/templates/archive.aspx?news=276

Mmusi Maimane- http://whoswho.co.za/mmusi-maimane-44612

Garett Cliff- http://www.garethcliff.com/

Pieter Geldenhuys- http://pietergeldenhuys.com/

Brian Kally- https://za.linkedin.com/pub/brian-kally/4b/888/959

Jonathan Jansen- http://www.ufs.ac.za/adhoc-pages/rectorate/prof-(jd)-jonathan-jansen

Ricardo Peach- http://ricardopeach.com/

Pamela Nomvete- http://whoswho.co.za/pamela-nomvete-4789

Gil Ovid- https://za.linkedin.com/pub/gil-oved/3/910/892

Pepe Marais- http://joepublic.co.za/people

Angelo Mockie- https://za.linkedin.com/pub/angelo-mockie/27/56/302

PhilippaTumubweinee- http://natagri.ufs.ac.za/templates/staffmember.aspx?DCode=101&pid=zyNJm7KI%2b1k%3d

Melody Mentz- https://za.linkedin.com/in/melodymentz

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