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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

Honorary doctorate to Archbishop Emeritus Desmond Tutu attracts wide attention

2011-01-27

Archbishop Emeritus Desmond Tutu after receiving his honorary doctorate in Theology at the UFS.
- Photo: Hannes Pieterse

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The University of the Free State (UFS) awarded an honorary doctorate to Archbishop Emeritus Desmond Tutu on Thursday, 27 January 2011. The graduation ceremony, which was attended by guests from across the country marks a milestone in the history of the university.

Amongst the guests were the ambassador of the USA to South Africa, Mr Donald Gips; the British High Commissioner to South Africa, Dr Nicola Brewer; members of the local government; Ms Barbara Hogan, former Minister of Public Works and the daughters of Bram Fischer, Ruth Fischer-Rice and Ilse Fischer-Wilson. Friends of Dr Tutu, Dr Ahmed Kathrada, Ms Barbara Hogan and Dr Allan and Ms Elna Boesak also attended the occasion.

The UFS also received a message of congratulations from the Deputy President of South Africa, Mr Kgalema Motlanthe. “The choice to honour this exemplar of virtue to which most of the world still look for direction as it buckles under social, political and economic difficulties is laudable in all respects,” he said.

Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS, said: “We honour a great son of South Africa who made a tremendous contribution to peace, reconciliation and justice in South Africa and in the world.

“There were times when few of us thought apartheid would end in our lifetime, yet you stood as a rock reassuring us, not about a black future, but about our common future. For this reason, Arch, we would not miss this opportunity to honour you for any reason whatsoever.

“You, Sir, are a Jew among Muslims, a Christian among Hindus, a Catholic among Anglicans, a bridge-builder among all of us. That is why we love you; because you look deeper and see further than all of us.”

According to Prof. Francois Tolmie, Dean of the UFS’s Faculty of Theology, the university honours Dr Tutu for his contribution as theologian – through his teaching and the books he wrote – as well as for the role he played in bringing about reconciliation in South Africa as well as in the rest of the world. The university also honours Dr Tutu as a moral and spiritual leader who never sacrificed his integrity as a Christian.

Apart from being a church leader and a leading world figure, Dr Tutu is the author of several books and also held a number of teaching posts at various tertiary institutions.

In 1984, he received the Nobel Peace Prize for his role as a unifying leader figure in the campaign to abolish apartheid in South Africa. A further highlight in his career was his election as Archbishop of Cape Town in 1986. He was the first black African to serve in this position, which placed him at the head of the Anglican Church in South Africa.

Many South Africans also remember the role he played when President Nelson Mandela appointed him in December 1995 to chair the Truth and Reconciliation Commission, which was established to investigate human rights violations during the apartheid era. The Archbishop guided the nation in the process of choosing forgiveness over revenge and in so doing set a historic international precedent.

In 1996, he retired as Archbishop of Cape Town but continues to speak out in favour of human rights, equality and social justice in South Africa and throughout the world.

In August 2009, President Barack Obama presented him with the Medal of Freedom, the United States of America’s highest civilian honour. Dr Desmond Tutu is recognised around the world as a moral leader committed to the human rights of all people.

Today he is chairman of The Elders, a group of world leaders who, in view of their integrity and leadership, are equipped to deal with some of the world’s most pressing problems.

Prof. Tolmie says: “It is often asked how Dr Tutu could have achieved all this in the span of one lifetime. Some people would refer to his warm personality or his humanness, his deep sense of humility or his wonderful sense of humour. Probing a little deeper, however, one is struck by Dr Tutu’s deep relationship with God. He is known as a man of faith, a man of prayer. He lives his life coram Deo, in the presence of God.”

Dr Tutu also lead the introduction ceremony of the UFS’s International Institute for Studies in Race, Reconciliation and Social Justice.

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

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