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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

A magnificent Winter Graduation Ceremony

2013-06-27

28 June 2013
Photo: Johan Roux

Winter Graduation video (YouTube)

The way to immortalise a person, is to live by his example. PhD and master's graduates were imbued by the following message from Dr Khotso Mokhele, Chancellor of the University of the Free State (UFS), during the UFS Winter Graduation Ceremony: to follow Nelson Mandela's majestic example is to guarantee that his life was not in vain.

Dr Mokhele honoured the graduates for their achievements "that clearly did not come easy", referring to the sacrifices on their part and the role of their support structures.

He also praised members of the UFS' leadership team who contributed academically to the excellent standards. Prof Teuns Verschoor, former Vice-Rector: Institutional Affairs, and Prof Driekie Hay, Vice-Rector: Academic, were especially mentioned for their role as respectively co-promoter and promoter of two PhD graduates.

A total of 63 doctorates and 414 master's degrees were awarded to graduates from South Africa, Nigeria, Lesotho, Uganda and Zimbabwe on Thursday 27 June 2013.

On the previous day, the School of Open Learning kicked off the graduation event by conferring 320 qualifications.

The graduates, most of them full-time educators, received qualifications ranging from certificates to diplomas.

"I hope that you will plough back what you have learned and that this qualification will make you a better educator, an inspired one, one that will relentlessly put your efforts into increasing a better future for our children," Prof Hay said, highlighting challenges in South Africa's education system.

"Become enthused, obsessed and passionate to change the education system. Be the change agent in your schools to contribute in giving the quality education our children so desperately need," she said.

An exceptional moment at this year's graduation ceremony was when the two daughters of an academic, Prof Dave Lubbe of the Centre for Accounting, obtained their master's degrees. "It is indeed a highlight in my career that my daughters received their master's degrees cum laude at the same graduation ceremony, under my supervision!"

Prof Lubbe's two daughters, Nandi Lubbe and Leandi Steenkamp, both received their MCom with distinctions in Accounting. They completed their degrees under the supervision of Prof Lubbe and Nandi also won the Dean's medal as the best M student in the Faculty of Economic and Management Sciences.

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