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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

UFS keeps the power on

2015-06-24

At a recent Emergency Power Indaba held on the Bloemfontein Campus, support structures at the university met to discuss the Business Continuity Intervention Plan to manage load shedding on the three campuses of the UFS.

Currently, 35 generators serving 55 of the buildings have already been installed as a back-up power supply on the three campuses of the university. According to Anton Calitz, Electrical Engineer at the UFS, the running cost to produce a kWh of electricity with a diesel generator amounts to approximately three times the cost at which the UFS buys electricity from Centlec.

Planned additional generators will attract in excess of R4 million in operating costs per year. For 2015, the UFS senior leadership approved R11 million, spread over the three campuses. Remaining requirements will be spread out over the next three years. University Estates is also looking at renewable energy sources.

On the Bloemfontein Campus, 26 generators serving forty-one buildings are in operation. On South Campus, two generators were installed at the new Education Building and at the ICT Server Room. Lecture halls, the Arena, the Administration Building, and the library will be added later in 2015. Eight generators serving 12 buildings are in operation on the Qwaqwa Campus. In 2015, the Humanities Building, Lecture Halls and the heat pump room will also be equipped with generators.

Most buildings will be supplied only with partial emergency power. In rare cases, entire buildings will be supplied because the cost of connecting is lower than re-wiring for partial demand. According to Nico Janse van Rensburg, Senior Director at University Estates, emergency power will be limited to lighting and power points only. No allowances will be made for air-conditioning.

“Most area lighting will also be connected to emergency power,” he said.

Where spare capacity is available on existing emergency power generators, requests received for additional connections will be added, where possible, within the guidelines. The following spaces will receive preference:
- Lecture halls with the lights, data projectors, and computers running
- Laboratories for practical academic work and sensitive research projects
- Academic research equipment that is sensitive to interruptions
- Buildings hosting regular events

According to Janse van Rensburg, all further needs will be investigated. Staff can forward all emergency power supply needs to Anton Calitz at calitzja@ufs.ac.za

Staff and students can also manage load shedding in the following ways:

1. Carry a small torch with you at all times, in case you are on a stairwell or other dark area when the lights go out. You can also use the flashlight app on your phone. Download it before any load shedding occurs. This can come in handy if the lights go out suddenly, and you cannot find a flashlight. Load-shedding after dark imposes even more pressure on our Campus Security staff. We can assist them with our vigilance and preparedness by carrying portable lights with us at all times and by assisting colleagues.
2. Candles pose a serious safety risk. Rather use battery- or solar-powered lights during load shedding.
3. Ensure that your vehicle always has fuel in the tank, because petrol stations cannot pump fuel during power outages.
4. Ensure that you have enough cash, because ATMs cannot operate without electricity.
5. The UFS Sasol Library has study venues available which students can use during load shedding.
6. When arranging events which are highly dependent on power supply, especially at night, organisers should consult the load-shedding schedule before determining dates and preferably also make back-up arrangements. If generators are a necessity, the financial impact should be taken into consideration.

The senior leadership also approved a list of buildings to be equipped with emergency power supplies.

More about load shedding at the UFS:
Getting out of the dark
More information, guidelines and contact information

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