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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

PhD students’ voices reverberate across Africa and beyond
2014-01-14

 

Noel Ndumeya, Tinashe Nyamunda, Ivo Mhike and Anusa Daimon
Photo: Hannes Pieterse
The Centre of Africa Studies (CAS) has been recruiting the best young scholars from across the SADC region – with magnificent success. In the span of six months, four PhD students have excelled both on the African continent and abroad.

Anusa Daimon, Noel Ndumeya, Ivo Mhike and Tinashe Nyamunda – the names of these distinguished students. Set against the backdrop of global excellence and competition, they have been awarded several positions at conferences and already published world-wide.

Anusa Daimon’s PhD studies at the CAS focuses on Malawian migrants and their descendants in Southern Africa. It explores issues of identity construction and agency among this group.

Since his arrival at the CAS, Daimon has won two fully-funded awards to attend international conferences and workshops. He was invited to attend the Young African Scholars Conference at Cambridge University in the UK. He also went to Brazil to the IGK Work and Human Lifecycle in Global History Summer Academy. This workshop explored the historical and modern meanings and practices of work in terms of ‘freedom’ and ‘unfreedom’.

Noel Ndumeya holds a special interest in environmental history and the aspects of conservation and conflict. His PhD hones in on land and agrarian studies with specific focus on South Eastern Zimbabwe.

Ndumeya has won an award from the African Studies Association United Kingdom (ASAUK). This earned him an invitation to Nairobi, Kenya, to work with an editor from the Journal of Southern Africa Studies (JSAS).

Ivo Mhike’s research specialises in youth culture and their relationship with the state. In his PhD he uses juvenile delinquency as a window towards an analysis of social constructs of youth behaviour. This includes youth policy and their institutional and administrative links to the state.

Mhike has been invited to attend the CODESRIA Child and Youth Institute in Dakar, Senegal, with the theme: Social Protection and the Citizen Rights of Vulnerable Children in Africa.

Tinashe Nyamunda specialises in African Economic History. His PhD thesis is entitled, “The State and Finance in Rhodesia: A study of the evolution of the monetary system during the Unilateral Declaration of Independence (UDI), 1965–1979”.

Under the direction of his primary supervisor, Prof Ian Phimister and his secondary supervisor, Dr Andrew Cohen, four of his papers have been accepted for publication. Nyamunda also received sponsorship from the Rector’s Office for an edited book collection of which he is the leading author. The book focuses on the many aspects of Zimbabwe’s blood diamonds.

Recently, Nyamunda has contributed papers at conferences in Botswana and Scotland and attended a workshop at Lund University in Sweden. He has also received an invitation from Germany and Oxford to present some chapters of his PhD thesis.

“The centre has provided the best working environment any PhD student can dream of,” Nyamunda said. He continued to remark that the opportunities Prof Jonathan Jansen has created opened up immense possibilities for them.

“Given these fruitful experiences in just a year at the university,” Nyamunda said,” imagine what can be accomplished given the resources and environment availed by the institution.” The prospects after his PhD studies looks bright, he concluded, because of the opportunities provided by the UFS.

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