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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

SAB World of Learning Brewery bid awarded to Kovsie Brewing

2017-11-28

Visitors from SA Breweries (AB InBev), Khosi Mogotsi,
Patience Selesho and Zinhle Ngcobo with
Dr Jan-G Vermeulen and Dr Errol Cason from
Kovsie Brewery.
Photos: Moeketsi Mogotsi

With the recent procurement of SAB by Anheuser-Busch InBev SA/NV (AB InBev), a Belgian transnational beverage and brewing company, the 500L educational brewery located at the SAB Cyril Ramaphosa World of Learning, became available for donation. After an initial shortlisting of three universities, the SAB World of Learning Brewery was awarded to the University of the Free State (UFS) to be managed by Kovsie Brewing.

Prof Corli Witthuhn, Vice-Rector: Research at the UFS, approved the application for a micro-manufacturing liquor licence right in the middle of campus, which effectively put the UFS bid in a class of its own. It is part of her vision that entrepreneurial activities must be visible on campus”

Sixteen universities were approached to obtain the brewery for their respective campuses.

Kovsie Brewing is an initiative started by postgraduate students at the UFS Department of Microbial, Biochemical and Food Biotechnology in 2012. The main objective of this initiative was to expose BSc students to brewing as a practical application of the scientific fields presented at the department.

Label mock-ups made by
Dr Jan-G Vermeulen from
Kovsie Brewery entered into
the yearly SAB Intervarsity
Brewing Competition. Kovsie
Brewing has won the best label
competition in 2013, 2014 and 2015
and was placed in the top three in
2016 and 2017.

First brewing and fermentation school
Dr Errol Cason, project leader at Kovsie Brewery, said: “Over the past five years the small-scale experimental brewery has steadily grown to the point where we obtained institutional support to establish the first Brewing and Fermentation School at the university.

Dr Cason explains that the primary role of Kovsie Brewing is to establish an accredited fermentation-based curriculum at the UFS to educate undergraduate and postgraduate students in the scientific process involved in the production of beer. “In addition, the donation enables Kovsie Brewing to provide practical job-related training and skills development on industrial grade equipment,” he said.

Emphasis on entrepreneurship
The secondary role is for Kovsie Brewing to function as a multi-disciplinary platform to stimulate the interaction between students from various fields of study. Currently Kovsie Brewing has well-established cooperative projects with both Marketing and Entrepreneurship programmes.

“In the future, Kovsie Brewing will expand on these multi-disciplinary interactions by incorporating other departments of the UFS with the focus on product development, logistics, as well as the legal aspects concerned with brewing,” Dr Jan-G Vermeulen from the Kovsie Brewery team said.

Corporate social investment representatives from AB InBev recently visited the university. Among others they met Drs Vermeulen and Cason. During their visit they also looked at other university projects, including the Department of Paediatric and Child Health and the Universitas Hospital, the Engineering Sciences Department and the Naval Hill Planetarium.

Khosi Mogotsi from AB InBev said: “It was wonderful to experience the passion with which UFS staff do their work.”

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