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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

King Moshoeshoe comes alive on national television

2004-11-02

Honourable Bethuel Pakalitha Mosisili, Prime Minister of Lesotho, and his wife; King Letsie III of Lesotho and Dr Ezekiel Moraka, Vice-Rector: Student Affairs at the UFS during the première of the film at the Royal Palace in Lesotho

The ground-breaking documentary film on the life and legacy of King Moshoeshoe, the founder of the Basotho nation, will come alive on Thursday 4 November 2004 when it is screened on SABC2 at 21:00

The film, called Moshoeshoe: The Renaissance King, forms part of a larger project by the University of the Free State (UFS) to honour the Moshoeshoe legacy of nation-building and reconciliation and to explore his role as a model of African leadership. It was produced by the well-known journalist Mr Max du Preez and commissioned by the UFS as part of its centenary celebrations.

The SABC2 screening was preceded by a première in Bloemfontein last month, and was attended by provincial political leaders.

This past weekend there was a première at the Royal Palace in Lesotho, which was attended by King Letsie III, the prime minister, the chief justice, judges, the president of the senate, cabinet ministers and directors-general.

“Through this documentary film the UFS commits itself to developing a shared appreciation of the history of this country and to the establishment of the Free State Province as a model of reconciliation and nation-building. King Moshoeshoe is also a strong common element, and binding factor, in the relationship between South Africa/the Free State, and its neighbour, Lesotho,” said Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS.

“Not all people in South Africa know the history of Moshoeshoe. Many Basotho – but not all – are well versed in the history of Moshoeshoe, and his name is honoured in many a street, town and township. Many white people know little of him, or have a very constrained or even biased view of his role and legacy. In Africa and the world, he is much less known than, for instance, Shaka,” said Prof Fourie.

“King Moshoeshoe did a remarkable thing in forging a new nation out of a fragmented society. He also created a remarkable spirit of reconciliation and a remarkable spirit of leadership,” said Prof Fourie.

According to Prof Fourie we already benefit from his legacy: the people of the Free State share a tradition of moderation and reconciliation rather than one of aggression and domination. “For the UFS this is also part of real transformation – of creating a new unity amidst our diversity,” said Prof Fourie.

“We also find in the legacy of King Moshoeshoe the possibility of a “founding philosophy”, or “defining philosophy”, for the African renaissance. To develop this philosophy, we must gain a deeper understanding of what really happened there, of his role, of his leadership. Therefore the UFS will encourage and support further research into the history, politics and sociology of the Moshoeshoe period, including his leadership style,” said Prof Fourie.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
2 November 2004

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