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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

Alumni inspired to keep flying the Kovsie flag high at reunion weekend festivities

2015-09-01

Dr Khotso Mokhele and Adv Roelf Meyer

The University of the Free State hosted alumni from all over the country on the Bloemfontein Campus during a weekend of exciting events, talks, and tours around the campus on 28 and 29 August 2015.

The celebratory events were kick-started with a leadership symposium hosted by Dr Marcus Ingram, Director: Institutional Advancement with Adv Roelf Meyer. The symposium was attended by current student leaders and the SRC Presidents Alumni Association. In his dialogue with the audience, Adv Meyer shared his experiences and personal growth in the process of bringing about democracy in the country with student leaders as change agents. “If you really want to contribute to change, it is not only an intellectual exercise; it is also a heart and soul thing,” he said.

The anchor event was the inaugural Chancellor’s Distinguished Alumnus Award Luncheon hosted by Chancellor, Dr Khotso Mokhele. Prof Jonathan Jansen, Vice-Chancellor and Rector, welcomed guests by highlighting the latest extraordinary achievements of UFS students and academic staff.

Keynote speaker of the day, Ms Nozizwe Madlala-Routledge, Executive Director of Inyathelo and a renowned politician, spoke of the role that universities have in preparing women for leadership roles and how they, in turn, can prepare society for female leadership. She commended the UFS’s advancement efforts supported by the Kresge Foundation, which supports young people, to keep them in universities. “I am proud to say that the UFS’s efforts in advancement have achieved its goals.”

In his remarks, Dr Mokhele said “what draws a student back to his/her Alma Mater is the quality of the experience they had on campus. This campus contributed to the transformation of this country through alumni such as Roelf Meyer and Kobie Coetsee.” He said this initiative should create a lived experience for students on the university campus. The Chancellor presented the Distinguished Alumnus Award to Adv Roelf Meyer, for his outstanding contributions to the human interests of South Africa, and his current work of facilitating peace processes around the world.

In accepting the award, Adv Meyer introduced Youth Zones, a project which he has been involved with for the past five years, empowering and supporting 40,000 youths in the Free State. In accepting the award, he said “I was a first-year student in 1960, my year group represented the most emphatic group of this university. There are many who came before and after us who well deserve this award, therefore, I accept it on behalf of all alumni.”

To wrap up the weekend’s festivities, former SRC President, Richard Chemaly, hosted the Faculty of Law alumni cocktail event at the CR Swart Auditorium.
Speaking at the event, Prof Caroline Nicholson, Dean of the Faculty of Law, said “A faculty cannot exist without its alumni, we need you to carry us. Your continued support and collaboration is truly appreciated.”

Alumni and staff enjoyed further entertainment by well-known musical groups, Freshly-Ground and The Muses.

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