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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

New Genetics building on Bloemfontein Campus spirals into new frontiers

2015-09-11

On Thursday 3 September 2015, the Department of Genetics hosted the official opening of its new offices on the Bloemfontein Campus of the University of the Free State (UFS).

Prof Jonathan Jansen, Vice-Chancellor and Rector of the UFS, Prof Neil Heideman, Dean of the Faculty of Natural and Agricultural Sciences, and Prof Paul Grobler, Head of the Department of Genetics cut the ribbon, symbolising the opening of this building with its state-of-the-art facilities.

The new genetics building boasts a new administration block with a reception area, seven offices, a small committee room, and a seminar room for 50 people. Furthermore, the undergraduate laboratory block provides a laboratory for 150 students. The research block has facilities for 30 researchers.

This building also hosts a chemical waste sorting and storage facility. This is a first for the university.

Several sites were investigated for the new building, but due to its size and envisaged second phase, a “green fields” site was found on the western side of the campus. The main entrance caters for visitors from the north, students on foot, and those using the parking area in front of the library. The secondary south entrance is for those who use the dedicated parking area south of the building. The link between these two entrances is the spine of the building, a helix with services/buildings spaced on either side. The helix will be extended in the second phase to keep the circulation and linkage of buildings as simple as possible.

In his opening speech, Prof Grobler gave a breakdown of the history of the Department of Genetics. Today, this department, which opened its doors at the UFS in 1960, is proud of its 131 students and 46 honours students.

According to Major-General Edward Ngokha, Head of the Forensic Science Laboratory, students who graduate from the UFS in the field of genetics make excellent employees. The Forensic Science Laboratory has employed 25 honours students since the BSc Honours degree in Genetics was implemented in 2010.

“The UFS delivers education of high quality and high standards. Thank you for your contribution toward fighting crime by delivering well-prepared, committed employees,” said Major-General Ngokha.

The department presents programmes on population conservation genetics, plant molecular genetics, cytogenetics, forensic genetics, forensic science, human genetics, and behavioural genetics.

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