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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

Intervarsity postponed to 2013
2012-03-08

The annual Intervarsity between the Universities of the Free State and North-West (NWU), which traditionally takes place in the third term, has been postponed to 2013.

The Intervarsity between the UFS and NWU is an illustrious event that has already reached the special milestone of celebrating a 70-year Intervarsity tradition. The UFS/NWU Intervarsity is also known as one of the most reckoned events on the local and national sports and student calendars, and it is widely supported.
 
Representatives from both universities could for a variety of reasons not decide on a date which suited both universities.
 
The respective Intervarsity committees and senior managers of both universities have also taken the interests of the respective university communities and alumni of the institutions into account and have decided to postpone the 70th-year celebration of Intervarsity by a year in order to be able to celebrate the milestone properly.
 
The UFS would have received the NWU in Bloemfontein this year and will therefore host the 70-year celebrations of the event next year as well.
 
Mr Rudi Buys, Dean: Student Affairs at the UFS has expressed his gratitude for the fact that both universities are committed to a special celebration of the Intervarsity tradition in 2013.
 
“The celebration of the 70th Intervarsity between the two institutions will be an important milestone to commemorate decades of friendship, collaboration and healthy competition. Therefore we welcome this opportunity to plan a bigger and better programme for 2013,” he said.
 
The UFS-NWU 70-YEAR Intervarsity firstly aims to establish the programme as a proud example for both universities, where students and staff can pit their strengths against one another in a healthy manner.
 
The aim is to extend Intervarsity to various sections of the respective university communities to enable more students to participate. For instance, more sports codes will be added to the traditional competition on the rugby, soccer, netball and hockey fields, whilst various events focusing on arts and culture, i.e. choral singing and debating competitions, as well as dialogue between student leaders, will take place as part of the programme. All campuses of the two universities will participate in the programmes.
 
Students are even investigating the possibility of electronic competitions such as on-line games as part of the Intervarsity
 
During the Intervarsity last year, several new possibilities were already tested to ensure that the 70th anniversary would be a huge success.
 
The Central Intervarsity Committee of the UFS has decided to replace the Intervarsity 2012 programme with an INTRA-varsity programme between its respective campuses. For this occasion, various sports, arts and culture, and leadership events between the Bloemfontein and Qwaqwa Campuses are planned, and the Central University of Technology might be invited as well to participate as guests in some programmes.

Media Release
8 March 2012
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za


 

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