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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

UFS awarded tenders worth R22,5 million for Maths and Science teacher-training

2010-03-17

The Centre for Education Development (CED) at the University of the Free State (UFS) has received tenders worth about R22,5 million over the past two years from four provinces to train Mathematics and Science teachers from underperforming schools.

The CED has received tenders from the following provincial departments of education: Free State, Northern Cape, North West and Mpumalanga.

“The centre has a good reputation for the training of teachers in these disciplines and has been involved with the upgrading of Maths and Science teachers for at least 15 years,” said Prof. Daniella Coetzee, Director of the CED.

It is currently busy with the training of North West teachers after being awarded a R13,5 million tender by the Province as part of its quest to improve pass rates in Mathematics and Natural and Physical Sciences in underperforming schools.

“The tender is for the upgrading of the knowledge and methodology of teachers for Mathematics and Natural and Physical Science, as well as the upgrading of the knowledge of subject specialists in the North West Province,” said Prof. Coetzee.

For this project the centre trains 1 000 teachers and 90 subject specialists from underperforming schools over a period of three years.

The programme commenced in February this year with a baseline assessment of the teachers to determine knowledge and methodology gaps upon which to focus in the training.

“After the programme has been completed we will also do a post-assessment to see if there had been progress,” she said.

The training is offered only on Saturdays at Vryburg, Klerksdorp, Makapanstad, Brits and Zeerust and is presented by lecturers from the CED as well as selected and trained tutors from the North West province.

“We have successfully completed another Maths, Science and Technology project for the North West Department of Education. We have also completed similar projects for the Northern Cape and one for the Free State Department of Education,” she said.

These completed projects entailed formal qualifications (Advanced Certificate in Education) in Maths, Science and Technology and were worth in excess of R5 million.

The CED has just been recently awarded yet another tender in excess of R4 million over a period of two years by the Mpumalanga Department of Education.

Prof. Coetzee had the following to say about the CED being the preferred choice of these provincial Departments of Education: “It has to do with the fact that the CED has been performing well with the upgrading of teachers. It has proven itself as a leader in the in-service training of Maths and Science teachers in South Africa.”

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za
17 March 2010

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