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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

Council approves two senior appointments

2012-03-13

Dr Choice Makhetha and Prof. Hendri Kroukamp
13 March 2012

We are delighted to announce the appointment of Dr Choice Makhetha as Vice-Rector: External Relations, and Prof. Hendri Kroukamp as Dean of the Faculty of Economic and Management Sciences.

Both appointments were approved on Friday 9 March 2012 by the UFS Council during its quarterly meeting at the Bloemfontein Campus.

“Dr Makhetha is an experienced administrator in higher education and has spent time shadowing the Presidents of Harvard and Spelman Universities in the USA, where she gained invaluable experience in positioning universities for world-class impact,” said Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS.

Her portfolio will entail external linkages, partnerships and strategic alliances of the university with national and international stakeholders.

Previously, Dr Makhetha was the Special Assistant to the Vice-Chancellor. Before that she was acting Dean: Student Affairs, also at the UFS. She has served as acting Vice-Rector: External Relations since February 2011.

Dr Makhetha obtained a Master’s degree in Political Science from the UFS in 2000 and a Ph.D., also in Political Science, in 2003. She was named the UFS’s Dux student for 1998/99. Dr Makhetha has received many awards for her work and she serves on various boards and committees in South Africa and abroad.

In 2010 and 2011 she was a fellow at Harvard University and Spelman College as part of Higher Education South Africa (HESA)’s Higher Education Leadership and Management programme.

“Prof. Kroukamp is a distinguished academic in the field of Public Administration and a highly experienced manager and leader of academic departments. He has been serving as acting Dean of his faculty since September 2010,” said Prof. Jansen.

Prof. Kroukamp holds a B.A. (Hons.) degree in Public Administration from Stellenbosch University and an M.A. degree from the University of Port Elizabeth (UPE). In 1993 he obtained a qualification in Project Management from the World Bank. He completed a D.Phil. in Public Administration at UPE in 1996, where he was a lecturer. Prof. Kroukamp joined the UFS in 1999 as a professor and Chairperson of the Department of Public Management.

He is the referee of various national and international publications, serves on various publication boards and is a member of various national and international boards and committees.

Prof. Kroukamp, who is a National Research Foundation (NRF)-rated researcher, has received many NRF awards. Amongst these are NRF Overseas International Conference Awards in Turkey, Korea, Poland and France. He has also received a UFS Top Research Award in the Faculty of Economic and Management Sciences.

Both appointments apply retrospectively on 1 March 2012.

Media Release
13 March 2012
Issued by: Lacea Loader
Director: Strategic Communication
Tel: +27(0)51 401 2584
Cell: +27(0)83 645 2454
E-mail: news@ufs.ac.za

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