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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

R40 million construction contract with black empowerment group starts at UFS

2006-09-04

During the ceremonial kick-off of the biggest construction project in the history of the UFS were from the left: Ms Vuyiwe Mkhupha (Manager of Sikeyi Construction), Prof Frederick Fourie (Rector and Vice-Chancellor of the UFS) and Prof Steve Basson (Head of the UFS Department of Chemistry). Photo: (Gerhard Louw)

R40 million construction contract with black empowerment group starts at UFS

The biggest construction contract in the history of the University of the Free State (UFS) to the value of R40 million has started on the Main Campus in Bloemfontein. The contractors are Ströhfeldt Construction, in a joint venture with Sikeyi Construction, a black empowerment partner.

The contract comprises the extensive modernising, refurnishing and extension of the Chemistry Building. This is the highest amount the UFS has ever spent on the refurnishing of a building.

A number of initiatives have contributed to the fact that the UFS Department of Chemistry is one of the foremost chemistry departments in the country:

Expensive equipment and apparatus to the value of almost R20 million were acquired by the department the past year;
The basis of this is a strategic partnership with Sasol, the biggest research and development company in the country;
The purchase of the most advanced 600MHz nuclear magnetic resonance spectro meter in Africa;
The purchase of a single crystal X-ray diffractometer; and
The purchase of a differential scanning calorie meter, used to test the effect of heat on chemicals. This apparatus comprises of the most advanced detectors in the world.

“Natural scientists need the necessary equipment, apparatus and laboratories to be able to exercise world-class science. Three years ago the UFS top management made a strategic decision to focus strongly on research and on our laboratories and lecture halls,“ said Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS, during the launch of the Chemistry Building’s refurbishment.

“I regard this project as a symbol of our investment in science and the academy,“ said Prof Fourie.

Prof Fourie said that the UFS spent almost R100 million in the last 5 years to renovate the Main Campus. New buildings such as Thakaneng Bridge were built and other such as the Reitz Dining Hall was renovated and converted into the Centenary Complex. “These projects, together with the refurbishment of the Chemistry Building, also show how the UFS contributes to the development and growth of not only Bloemfontein, but also how we invest in the Free State,“ said Prof Fourie.

According to Ms Edma Pelzer, Director: Physical Planning and Special Projects at the UFS, the current building originally comprised of the Moerdyk Building built in 1949 and a newer wing built in 1966. This building became too small and obsolete and a new part is now being added to the eastern side.

According to Ms Pelzer a great deal of the project comprises the dramatic upgrading and modernising of laboratories, existing mechanical systems and the installation of new systems. “The nature of the work of staff and students demands sophisticated mechanical systems such as air conditioning, fume hoods, the provision of gas, etc and therefore these received specific attention. The research laboratories, lecture laboratories and office areas will also be separated for safety and greater efficiency,” said Ms Pelzer.

“Interesting design solutions for the complex needs of the department were found and I foresee that the building and its immediate environment will be an adornment to the Main Campus after its expected completion in 2008,” said Ms Pelzer.

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

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