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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

Address by the first Inaugural President of the Central SRC

2005-08-03

The UFS Central SRC

Address by the first Inaugural President of the Central SRC of the University of the Free State, Mr Tello Motloung on Wednesday 3 August 2003

The Chairperson of the UFS Council, Judge Faan Hancke,
The Vice-chancellor and Rector of the UFS, Prof Frederick Fourie
The Vice-Rector Student Affairs of the UFS, Dr Ezekiel Moraka
The Presidents of the main campus SRC and the Vista campus SRC
Colleagues in the Central SRC, campus SRCs, students and fellow South Africans

Please receive my heartfelt revolutionary greetings

Vice-chancellor and rector what I bring here with me assisted by facts, is just the work of my imagination. Like a love letter addressed to a sweetheart miles away, even though you do not know how she feels, what she wants to hear, and do not even know what she looks like.

I value speech as just an honest intimation, that’s why I got into a habit of establishing a dialogue with people, looking at each other’s face, and persuading one another of what we are saying.

Vice-chancellor, today marks an important milestone in the history of the existence of the UFS. Today reflects the confidence and trust that students of the UFS have placed in us. They are confident that the Central SRC has both the will and the capacity to take our university forward as we confront the challenge of transformation.

Students are confident that they are correct to trust the Central SRC as the principal agent of change in our university that is genuinely committed to the objective of building a non-racial, non-sexist and democratic university. We need to frankly ask ourselves, as CSRC members, whether are we up to all these challenges?

All Central SRC members have to understand this fully, internalize it, and ensure that everything we do, does not betray the confidence and trust of students, or disappoint their expectations. I say this knowing that all Central SRC members have committed themselves to serve the students of the UFS, black and white, and no one among us (CSRC) needs any special lectures about this central commitment.

The UFS should be an omnibus, welcoming everybody on board. But we should be a bus with a clear direction. We will certainly lose our way if we, as an institution, don’t have a clear road map spelling out where we are heading to.

There should be clear guidelines on the role of students in the transformation process. Students should also be viewed as role players in transformation along with the University management, and not just opposing forces. There is no right time, other than this one, to move away from the politics of opposition to politics of transformation.

However, we need the support of management to do so. The University should value the role and contribution of student leaders, hear our legitimate claims and consider them as part of political and policy decision making.

Vice-chancellor and Rector, it remains our task to ensure that the UFS is transformed into an institution that is seen to be playing a vigilant role in developing students academically, intellectually, socially, culturally, politically and otherwise. The process of transformation is not ending tonight, it is just beginning tonight.

Judge Hancke, Prof Fourie, Dr Moraka, fellow students and fellow South Africans, I lead students at this university with a sense of pride and duty, and I know very well that I lead men and women, students who are all determined that we reach our destination safely and on time.

A navy divided within its ranks will be destroyed and vanquished by the enemy, but the navy united in purpose and action, loyalty and commitment will not sink but sail on to victory.

It is befitting to mention that every drop of my blood is telling me that the UFS is my home. I firstly became a student here, I became the SRC treasurer in my first year here, I became the deputy president here, and I became the first president of the Central SRC of the UFS.

Therefore you should never doubt my commitment towards the transformation of this university. To paraphrase what was said by students at another institution, “If there is no UFS in heaven, then I am not going.”

Let me conclude by thanking my ancestors for teaching me that even if I wined and dined with kings and queens, I am not a king myself, so I should not turn my back on people who made me what I am today.

Most importantly, I would like to thank the Almighty God and the grace of our Lord Jesus Christ for giving me time and power to lead this university.

It will be theoretically irresponsible if I ended my speech without indicating that “Only a Kovsie knows the feeling”.

I thank you.

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