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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

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 institute set to contribute to transformation in South Africa
2011-01-23

The UFS launches it's new International Institute for Studies in Race, Reconciliation and Social Justice.
- Photo: Dries and Henco Myburgh

Today (Thursday, 27 January 2011), almost three years after the Reitz affair, the University of the Free State (UFS) is launching its International Institute for Studies in Race, Reconciliation and Social Justice. This international institute will be inaugurated by Archbishop Emeritus Desmond Tutu, Nobel Peace Prize Laureate and Chairperson of the former Truth and Reconciliation Commission, who received an honorary doctorate in Theology from the university earlier today.

According to Mr John Samuel, Interim Director of the institute and former Chief Executive Officer of the Nelson Mandela Foundation, the institute seeks to establish itself as a premier international site for research on race, reconciliation and social justice.

“It is encouraging to see the UFS bringing to the fore such an initiative, which combines a study in race, reconciliation and social justice, all of which are indispensible elements in the process of rebuilding our nation,” said the Deputy President of South Africa, Mr Kgalema Motlanthe, in his message of congratulations to the university.

“I am confident that on the strength of its stature, coupled with its eminent experience as an academic institution, the UFS will further assist our country advance towards a united, non-racial, non-sexism, just and prosperous future.

“I wish the institute well in its arduous but noble task of contributing to the building of a better human society,” he said.

Prof. Jonathan Jansen, Vice-Chancellor and Rector, stated during his official inauguration in 2009 that the university would be an example of a place where reconciliation, forgiveness and social justice would not only be studied, but where it would also be applied in practice. “Students and scholars from across the world will come to the UFS to study the theory and practice about the building of societies across the boundaries of race, as well as religion, gender, disabilities and national origin,” Prof. Jansen said.

The institute is a critical space where engaged scholarship, public discussion, community engagement and teaching are innovatively integrated towards exploring and finding solutions to the complex and challenging work of social transformation in South Africa.

The institute furthermore works towards the realisation of its mission through a multiplicity of approaches and methods, informed by the notion that deep and complex social challenges require courageous and challenging scholarship, supported by innovative organisational forms and institutional arrangements.

Working from the inside to the outside, the institute will firstly serve the needs of the university, its staff and students. Through its research, the institute will endeavour to understand the challenges facing the UFS better, as well as how to address these challenges. For this reason, the concept of the UFS as a “live laboratory” and the use of evidence-based practice remain important for the university.

The institute will also reach out and empower its stakeholder communities through research and ongoing involvement on issues of race, reconciliation and social justice. Furthermore the institution expects to contribute to the creation of national and international networks and dialogue platforms pertaining to race, reconciliation and social justice.

For the first five years, the themes of 1) Values, Faith and Social Justice; 2) Development and Social Cohesion; 3) Teaching and Learning for Social Justice; and 4) Provincial, National, Global Perspectives and Leadership will direct the institute’s work.

The UFS will make a substantial contribution to the pursuit of reconciliation, greater social cohesion and equity in South Africa. The university is thus prepared to continue to engage the difficult, practical and trying work of building a strong, quality institution as it promotes racial healing and addresses the structural imbalances of the past. It is at this nexus that the institute commits to enabling change at the university as well contributing to transformation in South Africa.

Deputy President Kgalema Motlanthe's message of support to the University of the Free State (PDF format)

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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