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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

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

Shack study holds research and social upliftment opportunities
2015-02-10

Photo: Stephen Collett

When Prof Basie Verster, retired head of the Department of Quantity Surveying at the University of the Free State (UFS), initiated an alternative form of housing for Johannes - one of his employees - a decision was made to base research on this initiative. This research project in Grasslands, Heidedal focused on the cost and energy efficiency of green and/or sustainable shacks.

Esti Jacobs from the Department of Quantity Surveying, together with an honours student in Quantity Surveying, a master’s student in Architecture, and young professionals at Verster Berry, helped with the project.

The physical goals of the project were to create a structure that is environmentally friendly, and maintains a comfortable interior climate in winter and summer, as well as being cost-effective to erect. The structure also had to be socially acceptable to the family and the community.

“The intention was to make a positive contribution to the community and to initiate social upliftment through this project. Structures such as the ‘green shack’ may serve as an intermediate step to future housing possibilities, since these structures are relatively primitive, but have economic value and could be marketable,” she said.

Esti explains the structure of the building, which consists of gum poles and South African pine bearers, with a timber roof and internal cement block flooring. The building is clad with corrugated iron and has a corrugated iron roof finish. Additional green elements added to the structure were internal Nutec cladding, glasswool insulation in walls, internal gypsum ceiling boards with ‘Think Pink’ insulation, internal dividing wall and door, polystyrene in the floors, and tint on the windows. A small solar panel for limited electricity use (one or two lights and electricity to charge a cellphone) and a Jojo water tank for household consumption by the inhabitants were also installed.

Esti said: “Phase one of the research has been completed. This phase consisted of an investigation into the cost of an alternative form of housing structure (comparing traditional shacks with the planned structure) as well as the construction process of the physical housing structure.

“Phase two of the research, commencing in February 2015, will last for two to three years. This phase will include the installation of temperature and relative humidity logging devices inside the existing traditional shack and the new green shack. The logs will be regularly monitored by the UFS Department of Quantity Surveying and Construction Management.

These data will enable the researchers to measure the differences in comfort levels inside the two different structures. The data, together with other information such as building materials and methods, are then processed by software programs. Through the simulation of different environments, building materials, and alternate forms of energy, software models can be used to come up with conclusions regarding more energy-friendly building materials and methods. This knowledge can be used to improve comfort levels within smaller, low-cost housing units.

The UFS will be working with Prof Jeff Ramsdell of the Appalachian State University in the USA and his team on the second phase of the project.

“This research project is ongoing and will be completed only in a few years’ time,” said Esti.

The results of the research will be published in accredited journals or at international conferences.

 

For more information or enquiries contact news@ufs.ac.za.

 

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