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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

New projects will enhance the infrastructure on our campuses

2011-02-04

Illustration:

The university's Main Gate in Nelson Mandela Avenue, as designed by The Roodt Partnership Architects.

A new entrance to the Main Campus, a high-performance centre, commercial gymnasium, rock-climbing wall, memorial garden for women and a botanical garden are but a few of the number of building and renovation projects that will take place at the Main Campus of the University of the Free State (UFS) in Bloemfontein. A number of projects are also being done on the Qwaqwa Campus.

On the Main Campus the entrance in Nelson Mandela Avenue is being adapted to match the university’s new corporative identity which was introduced last week. This project will be completed at the end of March 2011,

The creation of an environment conducive to the development of its students in the field of teaching, learning and research, as well as sports and culture is one of the main reasons why the UFS is renovating existing buildings and developing new infrastructure.

With the construction of a high-performance centre and commercial gymnasium, the university wants to create a work environment for its staff that will not only contribute to the cultivation of maximum work performance, but also to staff wellness. The centre with its foyer and administrative offices will furthermore consist of a health desk, university sports institute, sports sales, a spinning and aerobic centre, and dressing rooms. The total area will extend over 2114 m² and the construction will take approximately 18 months. This development will take place on the western side of the university’s Main Campus, directly opposite the Furstenburg Gate and next to the new student housing.

The UFS is also progressing well with other building projects which commenced last year. One of the projects is a new Education Building which is being constructed opposite the UFS Sasol Library. Upon completion this building will be used for the training of maths and science teachers in the Foundation Phase. It will include three classrooms for 100 students each and an auditorium for 225 students as well as an office block. The auditorium will also be used as a classroom. The building has been designed according to environmentally friendly principles to save water and use power effectively. It should be completed this year.

Planning for the construction of more student accommodation on the Main Campus as well as the Qwaqwa Campus is already well underway. On the Qwaqwa Campus, a residence with 200 beds is being constructed. This also includes a computer laboratory. According to the planning, this residence should be completed by the end of the first semester in 2011. Furthermore, four residences will be constructed on the Main Campus. These residences are in the planning phase.

In order to place technology within reach of Kovsie students and thereby empowering them, computer laboratories were installed at the respective residences. The computer laboratories will eventually make provision for approximately185 computers for student use. Proper security is also planned to safeguard the equipment.

Work to a new building for the Faculty of Health Sciences is also proceeding rapidly on the site where the vehicle pool and Hertz were previously used. This will include a lecture hall for 200 students, five venues for 100 students each, as well as offices. Students from the School for Medicine and Occupational Therapy will make use of these facilities.

The new building for the Faculty of Economic and Management Sciences between the Flippie Groenewoud Building and the Wynand Mouton Theatre is also coming along nicely.

On the university’s Qwaqwa Campus a new Education building is being constructed. This building will include a lecturing hall with 100 seats, four 50-seat classrooms, six offices, ablution facilities, a biology and science laboratory, as well as an information technology laboratory for 60 students.

In the meantime, existing buildings are being renovated on all the campuses. This includes, amongst others, improvements to the Architecture Building, the Biotechnology Building and the quarters for service workers on the Main Campus. Other improvements that have already been completed include the renovation of the Odeion’s foyer and the Callie Human Centre.

In future, students, staff and visitors to the UFS can also look forward to a rock-climbing wall at the Student Centre on the Thakaneng Bridge, a memorial park for women, residential accommodation within a sports environment, and a botanical garden.

Media Release
03 February 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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