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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

Four modernised controlled environment cabinets inaugurated

2006-07-27

Photographed in a controlled environment cabinet were at the back from the left: Mr Adriaan Hugo (head of the UFS Electronics and Mechanisation Division), Prof Herman van Schalkwyk (Dean: Faculty of Natural and Agricultural Sciences at the UFS) and Prof Koos Terblans (lecturer at the UFS Department of Physics). In front is Mr Koos Uys (engineering consultant from Experto Designa who helped with the cooling systems of the cabinets).
Photo: Leonie Bolleurs

Different look for research in controlled circumstances at the UFS

Research in controlled circumstances at the University of the Free State (UFS) turned a new page today with the inauguration of four modernised controlled environment cabinets of the Department of Soil, Crop and Climate Sciences.

“The controlled environment cabinets, which are situated next to the glass houses on the eastern side of the Agriculture Building on the Main Campus in Bloemfontein, were installed in the early 1980’s. The cabinets, used for research purposes in controlled circumstances by the UFS for many years, became dysfunctional and needed to be repaired and put into use again,” said Prof Herman van Schalkwyk, Dean: Faculty of Natural and Agricultural Sciences at the UFS.

“The cabinets are used by the agronomics, horticulture and soil science divisions of the Department of Soil, Crop and Climate Sciences to control factors such as the temperature, the intensity and quality of light, synthesis and humidity. This is done 24 hours a day, with hourly intervals,” said Prof Van Schalkwyk.

The cabinets are ideally suited to determine the joint and separate effects of these factors on the growth of plants. The adaptability of plants to climate can also be investigated under controlled circumstances. All of this leads to a better understanding of the growth and development process of plants, more specifically that of agricultural crops.

“The effect of these environmental factors on the effectiveness of insect killers such as fungus killers, insecticide and weed killers can also be investigated and can help to explain the damage that is sometimes experienced, or even prevent the damage if the research is timeously,” said Prof Van Schalkwyk.

A new cabinet can cost between R2-3 million, depending on the degree of sophistication. “Although controlled environment cabinets have been used for agricultural research for a long time, it has become costly to maintain them and even more impossible to purchase new ones,” said Prof Van Schalkwyk.

According to Prof Van Schalkwyk the cabinets were re-built by die UFS Electronics and Mechanisation Division. Some of the mechanisms were also replaced and computerised.

“The re-building and mechanisation of the cabinets were funded by the faculty and because the work was done by our own staff, an amount of about R1 million was saved. The maintenance costs will now be lower as the cabinets are specifically tailor made for our research needs,” said Prof Van Schalkwyk.

Where all monitoring was done manually in the past, the cabinets can now be controlled with a computer. This programme was designed by Prof Koos Terblans from the UFS Department of Physics.

According to Prof Van Schalkwyk the modernisation of the cabinets is part of the faculty’s larger strategy to get its instruments and apparatus up to world standards. “With this project we have proved that we can find a solution for a problem ourselves and that there are ways to get old apparatus functional again,” said Prof Van Schalkwyk.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
26 July 2006

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