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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 cardiologists and surgeons give children a beating heart

2015-04-23

Photo: René-Jean van der Berg

A team from the University of the Free State School for Medicine work daily unremittingly to save the lives of young children who have been born with heart defects by carrying out highly specialised interventions and operations on them. These operations, which are nowadays performed more and more frequently by cardiologists from the UFS School of Medicine, place the UFS on a similar footing to world-class cardiology and cardio-thoracic units.

One of the children is seven-month-old Montsheng Ketso who recently underwent a major heart operation to keep the left ventricle of her heart going artificially.

Montsheng was born with a rare, serious defect of the coronary artery, preventing the left ventricle from receiving enough blood to pump to the rest of the body.

This means that the heart muscle can suffer damage because these children essentially experience a heart attack at a very young age.

In a healthy heart, the left ventricle receives oxygenated blood from the left atrium. Then the left ventricle pumps this oxygen-rich blood to the aorta whence it flows to the rest of the body. The heart muscle normally receives blood supply from the oxygenated aorta blood, which in this case cannot happen.

Photo: René-Jean van der Berg

“She was very ill. I thought my baby was going to die,” says Mrs Bonizele Ketso, Montsheng’s mother.

She says that Montsheng became sick early in February, and she thought initially it was a tight chest or a cold. After a doctor examined and treated her baby, Montsheng still remained constantly ill, so the doctor referred her to Prof Stephen Brown, paediatric cardiologist at the UFS and attached to Universitas Hospital.

Here, Prof Brown immediately got his skilled team together as quickly as possible to diagnose the condition in order to operate on Montsheng.

During the operation, the blood flow was restored, but since Montsheng’s heart muscle was seriously damaged, the heart was unable to contract at the end of the operation. Then she was coupled to a heart-lung machine to allow the heart to rest and give the heart muscle chance to recover. The entire team of technologists and the dedicated anaesthetist, Dr Edwin Turton, kept a vigil day and night for several days.

Prof Francis Smit, chief specialist at the UFS Department of Cardiothoracic Surgery, explains that without this operation Montsheng would not have been able to celebrate her first birthday.

“After the surgery, these children can reach adulthood without further operations. Within two to three months after the operation, she will have a normal active life, although for about six months she will still use medication. Thereafter, she will be tiptop and shortly learn to crawl and walk.”

Mrs Ketso is looking forward enormously to seeing her daughter stand up and take her first steps. A dream which she thought would never come true.

“Write there that I really love these doctors.”

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