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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

Central SRC constitution for UFS approved by Council

2005-07-20

University of the Free State Fact Sheet

1. The Council of the University of the Free State (UFS) on 10 June 2005 unanimously approved the establishment of a Central Student Representative Council (CSRC) to constitute a legitimate basis for the democratic participation of students of all three of its campuses in the governance of the university.

2. In a major breakthrough and transformation step for student governance, the Central SRC will include representatives of the main campus in Bloemfontein, the Vista Bloemfontein campus and the Qwaqwa campus of the UFS.

3. The need to establish the Central SRC follows the incorporation of the Qwaqwa campus into the UFS in January 2003 and the incorporation of the Vista campus in Bloemfontein into the UFS in January 2004.

4. The constitution of the Central SRC is the outcome of a consensus reached during a lengthy process of negotiation between the SRCs of the three UFS campuses, indirectly involving diverse student formations such as Sasco, ANCYL, YCL, Pasma, SASO, SADESMO, AZASCO, SCO, HEREXVII, KovsieAlliance, ACDP, etc. Independent constitutional and political experts facilitated key parts of the negotiation process.

5. In this process, the UFS management went out of its way to ensure the participation of all student formations, especially Sasco and the ANC Youth League, as well as the duly elected SRC officials of the three campuses.

6. With the establishment of a Central SRC, the UFS has adopted a federal student governance model whereby the CSRC is the highest representative student body on matters of common concern for all students. The three campuses of the UFS will retain SRC structures for each campus with powers and responsibilities for matters affecting the particular campus.

7. The central SRC will have 12 members made up of delegates of the different campus SRCs, including the presidents of these three SRCs. In total, the main campus will have 5 representatives, the Qwaqwa campus will have 4 representatives and the Vista campus will have 3 representatives. This ratio ensures a strong voice for the smaller campuses in the central SRC.

8. This arrangement will be reviewed after a year to make allowance for the phasing out of undergraduate (pipeline) students at the Vista campus, as was agreed in the negotiations preceding the incorporation of that campus into the UFS.

9. From these 12 members a central SRC president will be chosen on a quarterly basis to represent the general student body at Executive Management, Senate and Council.

10. The historic official inauguration of the first Central SRC is scheduled to take place in early August 2005.

11. This event, like the adoption of a broadly negotiated new constitution for the main campus SRC, represents a breakthrough in that all three campus SRCs delegations and all relevant student organizations have been part of the process and have accepted the outcome of the process.

20 July 2005

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