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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

Getting out of the dark

2015-04-28

Photo: Leonie Bolleurs

Since 2008, the University of the Free State has been busy with the planning and implementation of projects to reduce the impact of load shedding. To date, the cost of these projects has run to R6 million. They have been done primarily to ensure that the academic programme does not suffer damage as a result of the increasing interruptions in the power supply that are continuing this year.

The university’s greatest concern has been the provision of emergency power to the lecture halls and laboratories.

Thus far, 35 generators are servicing 55 buildings on the three campuses of the UFS. This includes 26 generators on the Bloemfontein Campus, eight on the Qwaqwa Campus in the Eastern Free State, and one generator on the South Campus in Bloemfontein. The generators are already in service, and are maintained in working order.

Since 2010, the university has also ensured that all newly-built academic buildings are equipped with emergency power supplies.

On the South Campus in Bloemfontein, the new lecture-hall building and the computer laboratory are equipped with emergency power, while the installation of emergency generators in other buildings is under way. The majority of the buildings on the Qwaqwa Campus in the Eastern Free State are equipped with emergency power supplies.

In the meantime, the UFS management has approved a further R11 million for the installation of additional generators on the three campuses. A further R1.5 million has also been approved for the purchase of two mobile generators.

To extend the work already done, the main task will be the installation of more generators on the Bloemfontein Campus to ensure that lecture halls with emergency power will be available for the centrally-arranged timetables, and to ensure that more of the critical laboratories will be provided with emergency power.

There are still some important buildings and halls on the Bloemfontein Campus that must be supplied with emergency power. However, it is a costly process and must be brought into operation gradually. The further implementation of emergency power depends on the delivery of equipment. The university is also investigating alternative solutions for power provisioning, including solar power.

Generators with spare capacity are optimally deployed to satisfy the lower needs of the campus, including the Odeion, the ANNEX at Microbiology, the Stabilis ANNEX, the Agriculture Building, the UV-Sasol library, and the Francois Retief Building.

In addition, the UFS is busy on all campuses, coupling area lighting, including

street lights and pedestrian walkways, to existing generators. Procedures for the operation of mechanical equipment, such as entrance gates, lifts, and so on, are currently being dealt with on all campuses. Continuous power sources for certain ICT equipment will be installed on all campuses to protect it against power surges.

Staff and students can also equip themselves with the necessary knowledge to manage load shedding in their specific areas of work and study. It is always helpful to know who to contact. The following list with guidelines and contact numbers has been compiled to assist you:

1. In an emergency, call Protection Services. This line will continue to operate, regardless of whether the power is on or off.
2. Avoid using lifts just before planned load shedding. Some lifts have emergency power packs which will bring the lift to the nearest floor and open the doors. If you still get stuck in a lift during a power outage, use your cellphone to call Protection Services. While you're waiting, stay calm and be patient.
3. If the access control systems in your building stop working after load shedding, contact Protection Services.
4. The students and staff members who are most at risk during load shedding are those in wheelchairs or with other mobility limitations. As far as possible, plan ahead to avoid being stuck on a floor or in a room that is difficult to access when load shedding is imminent. Please contact Protection Services if you need assistance.
5. During a fire, alarms WILL go off. Alarms are not power driven, but battery driven. For assistance, contact Protection Services.
6. The main UFS Switchboard (Bloemfontein Campus +27(0)51 401 9111 and Qwaqwa Campus +27(0)58 718 5000) will continue to operate during load shedding.

Contact details of Protection Services:

Bloemfontein Campus: +27(0)51 401 2634/2911
Qwaqwa Campus: +27(0)58 508 5460/5175
South Campus: +27(0)51 5051217

Communication and Brand Management will make information available on the UFS web, Facebook page, Twitter, Blackboard and the intranet. Get the load shedding schedule from Eskom’s webpage (http://loadshedding.eskom.co.za/). The Bloemfontein Campus falls in group 4 and the South Campus falls in group 2 in Centlec’s load shedding schedule.

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