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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

Department of English changed to empower students
2017-07-05

Description:Department of English  Tags: Department of English

Lecturers from the Department of English at the University of the Free State have been working
hard to create a robust learning environment for students through continuous assessment.
Photo: Sonia Small


A new curriculum, exciting third-year seminars, and a transition to continuous assessment. These are some of the changes made by the Department of English at the University of the Free State (UFS) over the past few years. The department, which also boasts four National Research Foundation (NRF) researchers, did this to tailor the curriculum towards the needs of its students and to foster a better culture of engagement.

According to Prof Helene Strauss, Head of the Department, the advantages of these changes are clear. “Staff have noted a significant improvement in both the basic writing and critical deliberation skills of our students, and in the responsibility they are taking for their own learning.” The new curriculum empowers students to take a position in relation to the knowledge they encounter in the classroom, thereby strengthening their own critical voice.

Taking continuous responsibility

One of the most significant changes for students was the fact that they have to take responsibility all the time. Prof Strauss says continuous assessment changed “last-minute cramming to near-daily, student-centred activities of reading, writing, and critical discovery.”

Because students have to prepare for lectures and reflect on materials, they are in a better position to internalise difficult debates and critical concepts. “Rather than telling students what to think, we help them develop flexible, critical tools to make sense of a changing world.”

Third-year seminars are another way of including forms of instruction that concentrate on the links between education and democracy, but still improve students’ ability to speak and write English accurately. Every semester, students can choose seminars from a range of topics such as ‘Witchcraft’ (Prof Margaret Raftery) and ‘The Art of Dying’ (Dr Mariza Brooks).

Research and associates around the world

Dr Marthinus Conradie, Dr Rodwell Makombe, Prof Irikidzayi Manase, and Prof Strauss are all NRF-rated researchers in the department.

The department also has affiliated research associates from countries including Zimbabwe, the USA, and Canada. Dr Kudzayi Ngara currently holds a competitive NRF grant for a project on Southern African urbanity, and Dr Philip Aghoghovwia recently received the prestigious African Humanities Programme Fellowship.

Under the guidance of Dr Ngara, the department has been able to roll out a new Honours programme on the Qwaqwa Campus. The campus now also offers students the opportunity to pursue MA and PhD studies.

Other highlights:
• Hosted the international Institute of the Association for Cultural Studies in 2015.
• Books published: Dr Susan Brokensha (with Burgert Senekal). Surfers van die Tsunami: Navorsing en Inligtingstegnologie binne die Geesteswetenskappe (SUN MeDIA, 2014); Prof Iri Manase. White Narratives: The depiction of post-2000 land invasions in Zimbabwe (UNISA Press, 2016); as well as co-edited volumes with Cambridge Scholars Publishing (Dr Oliver Nyambi) and Routledge (Prof Helene Strauss).
• Publications include three special journal issues (of ISI journals Critical Arts: South-North Cultural and Media Studies; Safundi: The Journal of South African and American Studies; Interventions: International Journal of Postcolonial Studies).

 



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