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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 can lead SA in race relations - Ramphele

2010-08-06

Pictured are: Dr Boesak and Dr Ramphele
Photo: Mangaliso Radebe

The University of the Free State (UFS) could well be a perfect model of excellence in race relations that the whole of South Africa could emulate.

This was said by Dr Mamphela Ramphele, the first African to be a Managing Director of the World Bank, during the Anti-Racism Network in Higher Education (ARNHE) Colloquium held at the UFS recently.

“Healing circles need to be constructed on this campus to address issues raised by the Reitz incident,” she said.

“You might yet be the pioneer of what needs to happen on a nation-wide level.

“Can we confidently commit today to go on this quest for a true humanity and walk together as fellow citizens and strive for a more human face for our society? That is our challenge. That is what the UFS is called to give leadership to.”

“It is this human face which has the power to liberate us from the body of death and strengthen us in our struggle for meaningful life together in South Africa,” added one of the main speakers, Dr Allan Boesak, a cleric and former anti-apartheid activist.

However, said Dr Ramphele, this could only be achieved if all South Africans, black and white, abandoned the fear for each other that was hindering, if not stalling, progress in this regard.

“Fear of each other is the most important impediment to the sustainability of our journey into a society united in our diversity,” she said.

“People in this country are afraid to stand up and be counted, including many vice-chancellors and clerics. They are afraid of being seen to be difficult, and that is a major problem. Fear is the most destructive emotion that you can have because it makes you really incompetent and unable to respond to challenges.”

She said the biggest impediment, though, to ending racism was denial. “White people deny vehemently that they are or have ever been racist,” she said.

“We need to go through a process of acknowledging our wounds and scars from our racist past and present missteps in public policy.”

“Instead of saying they are sorry, those who are conscious of their whiteness should rather say what they are sorry for,” said another main speaker, Prof. Dennis Francis, the Dean of the Faculty of Education at the UFS.

On the other hand, according to Dr Boesak, blacks were and still are, to a large extent, also to blame for their own ongoing oppression. “The key here was the acknowledgement of our sheepish timidity, our complicity,” he said.

The Chairperson of ARNHE, Prof. Norman Duncan, had this to say: “If we are to confront and eradicate racism in higher education institutions, we should not do so to create comfort zones for ourselves.”

The theme of this ARNHE Colloquium was Black consciousness and those conscious of their whiteness. It was presented by the International Institute for Studies in Race, Reconciliation and Social Justice at the UFS.

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

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