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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

Food insecurity should not stand in the way of education

2015-06-11

Every year, hundreds of students drop out of university due to financial difficulties – only to return to dire financial circumstances. It is only a few who manage to secure a bursary to fund their studies. These bursaries often pay only for academic and residential expenses, leaving students without additional funding for food.

The University of the Free State realized that up to 60% of its students were food insecure. Many of these students admitted to having to work after class to buy food or having to beg from friends. In 2011, the UFS launched the No Student Hungry Bursary Programme (NSH), which provides modest food bursaries to food insecure students. Currently, 130 students receive food bursaries from the programme to ensure they have one less thing to worry about while they are studying.

This year, at our Autumn Graduation Ceremony, six beneficiaries of the NSH Bursary Programme, received their degrees – an achievement all them feel they could not have reached was it not for the support by NSH.

For Tshililo Nethengwe, accounting student from Venda, her first year at university in 2012 was a daily battle. Although her parents managed to pay her study and accommodation fees, the meager monthly food allowance her parents could afford was not enough to last her the month.

“Every morning I used to tell myself not to think about food because I am here to study. Somehow, I still managed to get something to eat – even if it was just a few slices of bread a day. I was very determined to succeed in my studies, and NSH took away the burden of needing to ‘hustle’ and beg for food.”

Tshililo was one of six NSH recipients who received their degrees and is now doing her honours in B.Com Accounting.

“The NSH Bursary Programme invests in potential, and supports academic achievers who come from challenging backgrounds,” explains Vicky Simpson, co-ordinator of NSH.

“We promote the success of undergraduate students, enabling them to focus on their studies and not on where their next meal will come from. Successful graduates will have a positive and direct impact on our economy, different communities, and many households.”

The NSH food bursary is awarded to students on the basis of financial need, academic excellence, and the commitment to serve the community. We have helped more than 500 students since 2011, when Prof Jonathan Jansen, Vice-Chancellor and Rector, started NSH.

“These students share amazing stories that inspire us. Many had to endure hardship, but they managed to persevere, worked hard, and made it to university. The ability to buy a meal makes an enormous difference.”

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