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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

SRC elections: A first for UFS main campus

2005-08-14

Students on the main campus of the of the University of the Free State (UFS) will this week for the first time vote for the Student Representative Council (SRC) using two voting systems: proportional representation (PR) and first-past-the-post.

According to the Vice-Rector, Student Affairs, Dr Ezekiel Moraka, this year’s elections are a milestone for the UFS as it will be the first time that the main campus SRC will be elected according to the amended SRC constitution, which was approved by the UFS Council in June 2005.

“It is also a major breakthrough for student governance and transformation of the UFS main campus and constitutes a legitimate basis for the democratic participation of all students at the UFS main campus in the governance of the university,” said Dr Moraka.

The amended constitution of the main campus SRC determines that nine of the 18 SRC members must be elected by means of proportional representation and nine on the basis of an individual, first-past-the-post election.

According to Dr Moraka, the introduction of the proportional representation system follows earlier calls by some student formations, notably Sasco and the ANC Youth League, for such a system to be introduced at the UFS main campus in Bloemfontein.

The new main campus SRC constitution is the result of consensus reached during a lengthy negotiation process involving diverse student formations such as Sasco, the ANC Youth League, the Young Communist League, the ACDP, HEREXVII, KovsieAlliance, as well as the democratically elected SRC members of the main campus.

“Independent persons such as Mr Jack Klaas and Mr Kobus van Loggerenberg, a former SRC President, facilitated the negotiation process,” said Dr Moraka.

Students on the main campus in Bloemfontein will vote for a new SRC on Monday 15 August 2005.

SRC elections will also take place on the other two campuses of the UFS, which have their own SRC structures.

Students on the UFS-Vista campus in Bloemfontein will vote for a new SRC on Monday 15 August 2005 and Tuesday 16 August 2005.

At the Qwaqwa campus of the UFS, students will vote for a new SRC on Friday 26 August 2005.

The election processes on all three campuses will be closely monitored by independent electoral bodies.

After the three campuses have elected their respective SRCs a central SRC will be constituted. The central SRC will have 12 members made up of delegates of the three campus SRCs, including the presidents of these three SRCs. The main campus will have five representatives, the Qwaqwa campus will have four representatives and the Vista campus will have three representatives.

Main campus voting schedule:
Monday 15 August 2005 from 07:00-21:00. Ten voting stations will be set up across the campus. The results will be announced on Tuesday 16 August 2005.

Vista campus voting schedule:
Monday 15 August 2005 and Tuesday 16 August 2005 from 09:00-18:00 in the administration building. The results will be announced on Wednesday 17 August 2005.

Qwaqwa campus voting schedule:
Friday 26 August 2005 from 09:00-18:00 in the Senate Hall. If there is no objection to the final results, it will be announced on the same day.

Media release

Issued by:  Lacea Loader
   Media Representative
   Tel: (051) 401-2584
   Cell: 083 645 2454
   E-mail: loaderl.stg@mail.uovs.ac.za

14 August 2005

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