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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

Study Abroad Fair presents exciting opportunities

2013-04-23

Staff and students gain a wealth of information at the first Study Abroad Fair hosted on the Bloemfontein Campus.
Photo: Stephen Collett
23 April 2013

Kovsie staff and students gained a wealth of information at the first Study Abroad Fair hosted by the Office for International Affairs on the Bloemfontein Campus.

Representatives from partner universities across the USA, Europe and Asia took part in the fair, giving information on study opportunities abroad. They were joined by representatives of international funding agencies and foreign missions from countries including Canada, Indonesia, France and the Republic of Azerbaijan, who gave information on funding opportunities to study overseas.

Welcoming visitors, Ms Dineo Gaofhiwe-Ingram, Assistant Director: Internationalisation, said international education forms a very important and critical part of the university’s strategy of aiming and working towards becoming a research intensive university.

“I believe all here understand and know the value of an international education, both as a donor agency, as an embassy that has bilateral agreements with the South African government to support education, and as a staff member that is here with students to encourage them to go abroad. It is important that our staff and students get to learn and experience from others and others from them.”

Dr Choice Makhetha, Vice-Rector: External Relations, encouraged Kovsies “to visit the world and bring the world back to the UFS.”

Prof Jonathan Jansen, Vice-Chancellor and Rector, had a similar message, talking about the advantages of seeing the world. “You never get to be a good leader unless your sense of the world is bigger than yourself. My goal is to make sure that almost every undergraduate student has some experience of studying abroad.“

List of Exhibitors who took part in the Study Abroad Fair:

1. Funding Agencies
Embassy of USA
Embassy of France
Embassy of The Republic of Azerbaijan
European Union
Embassy of Canada
National Research Foundation (NRF)
Embassy of Switzerland
Embassy of Indonesia
Czech Republic Embassy
Research Africa
British Council

2. Partner Universities Abroad
Mahasarakham University (Thailand)
Appalachian State University (USA)
University of Brussels
Radboud University Nijmegen
The Hague University of Applied Sciences
University of Bremen
VU University Amsterdam
University of Groningen
University of Antwerp
University of Leuven
Jönköping University

3. UFS Representation
Postgraduate School (UFS)
Office for International Affairs (UFS)
Faculty of Education (UFS)
Department of Plant Sciences (UFS)
Department of Social Work (UFS)

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