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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

Full week of graduation ceremonies at UFS in April

2015-04-10

Autumn always sees the UFS’s first graduation ceremony of the year on the Bloemfontein Campus.

From 14 – 17 April 2015, graduates will once again be rewarded for their hard work while top speakers will address them in the Callie Human Centre. There will be a ceremony at 09:00 and at 14:30 each day on all four days of the graduation.

The programme for the 2015 April Graduation is as follows:

Tuesday 14 April 2015:

Professor Himla Soodyall will be the speaker at both ceremonies on this day. Prof Soodyall is a Medical Scientist for the South African Institute for Medical Research. She is also a Principal Medical Scientist for the National Health Laboratory Service, and a Director for the Human Genome Diversity and Disease Research Unit at the University of Witwatersrand.

During the first ceremony of the day at 09:00, all diplomas/certificates and B degrees in the Faculty of Natural and Agricultural Sciences will be awarded. Only Honours degrees in the Faculty of Natural and Agricultural Sciences will be awarded at the 14:30 ceremony.

Wednesday 15 April 2015:

Wednesday will see Ndumiso Hadebe take the stage to address graduates at both ceremonies.

At the age of 23, Hadebe is the Founder and Managing Director of Master Frontiers Consulting, a firm that capacitates leaders and managers to achieve business goals through their people. He worked previously as a Researcher at Shanduka Black Umbrellas, a flagship enterprise and supplier development programme of the Shanduka Foundation.

He has been received numerous awards for excellence in leadership, such as the Sedibeng District Municipal Mayor’s Award for Service and Leadership. He is a Brand South Africa Ambassador and Read Educational Trust Ambassador.

All diplomas/certificates, B and Honours degrees in the Faculty of Economic and Management Sciences, except B Com degrees, will be awarded during the morning ceremony at 09:00. Later, at the 14:30 ceremony, only B Com degrees in the Faculty of Economic and Management Sciences will be awarded.

Thursday 16 April 2015:

Multiple award winning South African TV presenter, Leanne Manas, will be the speaker at both Thursday ceremonies.

Manas has graced our screens for over a decade. Not many broadcasters can boast having had live TV experience, 5 days a week for 12 years. She is currently the anchor of SABC 2’s flagship breakfast programme, Morning Live. Leanne is a qualified Speech and Drama teacher. having studied at London Trinity College. She also has an Honours degree in English.
Diplomas/certificates up to and including Honours degrees in the Faculty of the Humanities, Social Sciences, and Communication Sciences will be awarded during the ceremony at 09:00. The 14:30 ceremony will have diplomas/certificates up to and including Honours degrees in the Faculty of the Humanities’ other qualifications except for Social Sciences and Communication Sciences.

Friday 17 April 2015:

Dr Maria Phalime will be the speaker at both ceremonies on Friday.

Phalime is a medical doctor and award-winning author. She practiced for a brief period as a general practitioner in South Africa and the United Kingdom, before leaving medical practice to pursue non-clinical interests. She has worked in trade and investment promotion, and has undertaken research and consulting in the areas of economic development and business facilitation.

Diplomas/certificates up to and including Honours degrees in the Faculty of Education (CE, NPDE and ACE excluded) will be awarded during the ceremony at 09:00. Diplomas/certificates up to and including Honours degrees in the Faculties of Health Sciences, Law, and Theology will be awarded at the 14:30 ceremony.

Click here for the simple layout of the 2015 April Graduation programme:
http://www.ufs.ac.za/adhoc-pages/2014-graduation-ceremony/graduation-ceremony

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