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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

Another boost for sport at the UFS

2005-10-13

A contract formalizing the appointment of Sports Plan (Pty) Ltd was signed by Prof Verschoor and Mr Morne du Plessis in the historic Main Building of the UFS Bloemfontein campus.

The University of the Free State (UFS) has officially appointed Sports Plan (Pty) Ltd, which has former Springbok rugby captain Morné du Plessis as managing director, to manage its Centre for Exercise and Sport Science Services (CESSS) on the Bloemfontein campus.

According to Prof Teuns Verschoor, Vice-Rector: Academic Operations, the appointment of Sports Plan (Pty) Ltd is another step in the implementation of the UFS’s wide-ranging sport strategy to improve sport facilities and elevate formerly marginalized sports such as soccer, hockey, netball, tennis etc.

Sports Plan (Pty) Ltd is the manager of the Sports Science Institute of South Africa and coordinates and manages the national basketball high-performance programme of SA Basketball, as well as the Boxing Academy on behalf of Boxing South Africa.

“It is also actively involved with the sports plans of several tertiary institutions like that of the University of Johannesburg and the University of Stellenbosch,” said Prof Verschoor.

“Sports Plan (Pty) Ltd was also appointed by the Ministry of Sport and Recreation to manage the allocation of sports codes to high-performance centres and to oversee the allocation of monies received from the National Lottery to these centres – this includes the CESSS at the UFS,” Prof Verschoor added.

In unfolding its national sports plan, the Ministry of Sport and Recreation has already identified the UFS-based CESSS as the high-performance testing centre for the national basketball teams whilst the national boxing teams are also earmarked to be trained at the UFS.

“We are glad to be associated with a company of this stature and look forward to work with them in the further development of sports at the UFS,” said Prof Verschoor.

According to Prof Verschoor, the CESSS will act as a centralised body that is responsible for the coordination and management of joint initiatives between professional service providers, research projects and KovsieSport.

“The centre will also coordinate and manage joint initiatives between various academic programmes in different academic subject fields such as sports medicine, bio kinetics, physiotherapy, dietetics, etc. ,” said Prof Verschoor.

These initiatives will help the UFS to become a centre and catalyst of sports development, to become internationally recognised in the field of exercise and sports science research and to become a centre for high quality sports performance enhancement.

Some of the objectives of the CESSS are:

To provide sports science services like to athletes, students, the general public and other stakeholders including certain national sport teams.
To provide the necessary teaching and training facilities and internship opportunities for UFS students in sports related fields of study will also be provided by the centre like human movement science.
To present skills-transfer programmes directed at the broader community like development of skills in various sporting codes.
To continue and extend the current chronic risk reversal programmes presented by the Department of Human Movement Science such as obesity management, cardiac rehabilitation and other lifestyle related conditions.

The centre was founded in 2003 and was until now managed by Dr Louis Holtzhausen, from Kovsie Health and a consultant, Dr Gary Vorster.

A contract formalizing the appointment of Sports Plan (Pty) Ltd was signed today by Prof Verschoor and Mr Morne du Plessis in the historic Main Building of the UFS Bloemfontein campus.

The manager of the centre appointed by Sports Plan (Pty) Ltd is Mr Charles Store, an alumnus of the UFS, previously employed at the Sports Science Institute in Cape Town and by the SANDF at 3 Military Hospital, Bloemfontein.

Media release
Issued by: Anton Fisher
Director: Strategic Communication
072-207-8334
12 October 2005

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