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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 changes format of graduation ceremony

2011-04-17

The highest number of qualifications in the history of the University of the Free State (UFS) will be awarded at the autumn diploma and graduation ceremony from 9-11 May 2011, which will be held in the Callie Human Centre on our Main Campus in Bloemfontein.

From this year, the format of the ceremony will change to make it more visible to students and the public. For the first time, all the doctoral and master’s degrees from each respective faculty will be conferred during one ceremony on 11 May 2011, instead of each faculty handling these qualifications individually. Another change in the format is that the procession will gather on the Red Square in front of the Main Building and move to the Callie Human Centre from there. Both academic staff and graduands will partake in the procession.

A total of 3 674 qualifications will be conferred during this year’s graduation ceremony, including 629 diplomas, 2 613 Bachelors and honours degrees, 372 master’s degrees and 58 doctorates.

An honorary doctorate in Drama and Theatre Arts will also be awarded to theatre stalwart Mr Pieter Fourie. He is one of the most acclaimed Afrikaans playwrights in South Africa and probably the only person to have left his mark as an actor, director, artistic director and writer.

Mr Fourie was awarded the Gerhard Beukes prize for drama , was honoured for his contribution to the arts by the South African Academy for Science and Arts and was appointed as trustee of the Arts and Culture Trust of the State President in 1997. He has also served as a committee member of the South African Academy for Science and Arts.

Mr. Fourie has also been the proud recipient of the Hertzog prize for drama, two FNB-Vita awards and a Fleur Du Cap award.

The full programme for the respective ceremonies is as follows:

Monday, 9 May 2011:

At 08:30, certificates and diplomas, excluding PGED and PGES, will be awarded to graduates from the Faculty of Education and at 12:00 PGED, PGED and B and honours degrees will be awarded to students from the same faculty. At 15:30 on the same day, certificates and B and honours degrees will be awarded to students in the Faculty of the Humanities.

At 19:00, the Faculties of Education, the Humanities and Economic and Management Sciences will have their prize-giving ceremonies for outstanding achievers.

Tuesday, 10 May 2011:

At 08:30, students in the Faculty of Economic and Management Sciences will graduate and at and 12:00 the Faculty of Natural and Agricultural Science will join them. This includes students in BML, B.Admin., B.Pub. and related honours degrees. At 15:30, 503 students from the Faculty of Natural and Agricultural Sciences will receive their certificates, diplomas and B and honours degrees.

At 19:00, the Faculties of Health Sciences, Natural and Agriculture Sciences, Law and Theology will have their prize-giving ceremonies.

Wednesday, 11 May 2011:

The Faculty of Health Sciences, the Faculty of Law and the Faculty of Theology will be awarding their certificates, diplomas and B and honours degrees at 08:30. At 12:00, all faculties will award a total of 372 master’s degrees and at 15:30 a total of 58 doctorates will be conferred.

The Chancellor’s Dinner will take place in the Centenary Complex on the Main Campus of the UFS at 19:00.

The graduation ceremony of our Qwaqwa Campus will take place in the Rolihlahla Mandela Hall on the Qwaqwa Campus on 7 May 2011 at 10:00. All the faculties at this campus will confer their degrees, certificates and diplomas at this ceremony.

Media Release
21 April 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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