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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

Qwaqwa Campus launches No Student Hungry Programme

2013-05-02

Samkelo Duma (white shirt) flanked by some of the guests during the launch of the NSH Programme on the Qwaqwa Campus.
Photo: Thabo Kessah
02 May 2013

The Qwaqwa Campus of the University of the Free State launched the No Student Hungry (NSH) Programme on Friday 26 April 2013. The programme aims to provide needy students with a daily balanced meal to enable them to concentrate in class and ultimately obtain their degrees. The programme – initiated by Vice-Chancellor and Rector Prof Jonathan Jansen in 2011 on the Bloemfontein Campus – already feeds hundreds of students.

Rudi Buys, Dean of Student Affairs who represented the Rectorate, encouraged students in need to focus more on their desire for greatness.

“Through this programme, you will be able you to shift your focus from the hunger pangs and rather focus all your energy on the hunger to make Africa great,” said Buys. “We want you to be different from the rest of your generation that is reluctant to compete for greatness. Many of your peers prefer mediocrity and it is our wish that through this programme, you can start learning to compete with the best,” Buys impelled.

According to the Qwaqwa Campus programme co-coordinator, Selloane Phoofolo, NSH operates on a primary and a secondary level.

“The primary level offers a food bursary to the students whose academic performance is above 65 percent and not receiving any form of financial assistance. For the 2013 academic year, we had 53 students applying and 31 have qualified. They are getting a meal for R25.00 a day at the Dining Hall,” said Phoofolo.

She further explained that, “On the secondary level, we provide monthly food parcels to 19 students who did not qualify for the food bursary. These food parcels are donated by Pick n Pay and Stop Hunger Now SA. For this, beneficiaries must undertake 40 hours of community service during the year. They must also partake in student activities. Their academic progress is monitored by the Office of Social Work.”

One of the beneficiaries, a final-year BA degree student Samkelo Duma, expressed his gratitude towards the UFS for giving him an equal opportunity to those in more fortunate situations to do his best in his studies. “It is difficult to study and concentrate on an empty stomach and I must say that the NSH is very helpful. I do not just get a meal, but I get a healthy meal to keep me going throughout the tough day,” Duma said.

Also present at the launch were the patrons of the programme, Ms Grace Jansen and Dr Carin Buys. They volunteer their time and energy to raise funds for the project.

Students apply for the allowances and are selected on the basis of financial need, academic results, active participation in student life programmes and commitment to give something back to the community.

You can also invest in these students' future by contributing R10.00 each time you sms the word 'Answer' to 38722.

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