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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

RC members of Armentum not expelled from residence

2009-05-29

According to a memorandum of agreement that was concluded between the University of the Free State (UFS) and the Residence Committee (RC), the Senior Bond Committee and seniors of the Armentum Residence, the parties involved agreed, among others, that the RC members of this residence would not be expelled from the residence.

This follows an incident during which a first-year student from Armentum, Alex Marais, was injured because of alleged initiation and admitted to the Bloemfontein Medi-Clinic.

According to the agreement, the RC members will resign from their positions and not make themselves available for the next RC election, with the exception of Mr M.J. Pretorius, the RC member for Rag. He will stay on as unelected member of the interim RC. The UFS undertook to pay the RC that is stepping down their honorariums honorariums in August.

The UFS also gave permission to the Residence Head of Armentum, Adv. Bradley Smith, to appoint an interim RC for the remaining period of office of the current RC.

The Senior Bond must also undertake to submit the current rules of the Senior Bond Committee to the Acting Rector, Prof. Teuns Verschoor, before 1 June 2009. The Senior Bond Committee undertakes to comply strictly with these rules, also during Senior Bond activities.

In addition the Senior Bond Committee and the current Residence Committee must submit the following information to Prof. Verschoor before the reopening of the UFS for the second semester :
- The current orientation practices with regard to first-year students.
- Proposals on how the practices can be adjusted to render them enforceable within humane, reasonable, fair and humanitarian limits in order to implement and comply with the objectives of orientation, the exercising of control and the laying down of rules.

The compensating fine that was levied against the tuition fees accounts of senior students of Armentum, which would have been used to contribute to the medical costs of Alex Marais, is now cancelled.

This settlement is final and the parties will not lay any claims against each other as a result of this incident in future.

Media Release:
Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
Email: radebemt.stg@ufs.ac.za
29 May 2009

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