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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

2014 Winter Graduation

2014-06-27

It is time for the 2014 Winter Graduation on our Bloemfontein Campus. From 2 – 4 July 2014 Masters and Doctoral degrees will be bestowed on graduates from across all seven faculties as well as the School of Open Learning. These include the conferral of Medicine degrees on the South African Cuban trainees.

Wednesday 2 July 2014 at 14:30: School of Open Learning
The School of Open Learning will confer a total of 609 degrees this year – almost double compared to the 320 of last year.

Thursday 3 July 2014 at 09:30: Faculty of Natural and Agricultural Sciences
Prof Magdalena Blum will receive an Honorary Doctorat, DPhil honoris causa, at this event. Prof Blum is an Extension Systems Officer in Rome. She works for a specialised agency of the United Nations called the Food and Agriculture Organization. This organisation’s mandate is:
• to improve nutrition,
• increase agricultural productivity,
• raise the standard of living in rural populations and
• contribute to global economic growth.

Her position serves to modernise and strengthen rural advisory services, their systems and networks worldwide. She has filled this position for almost nine years.

Prof Blum is driven by a passion for development, humanitarian work and female upliftment, but most of all, to enable people to help themselves.

Blum’s life has taken her from a small German village to Africa, Asia and Europe – and she has made an impact wherever she went.

Thursday 3 July 2014 at 14:30: Faculties of Economic and Management Sciences, Humanities, Education, Health Sciences, Law and Theology
At this ceremony, Faculty of the Humanities will award an Honorary Doctorate, DPhil honoris causa, on Prof Laura Mulvey. She is a feminist film theorist and worked at the British Film Institute for many years. She is currently a professor at Film and Media Studies at Birkbeck, University of London.

Prof Mulvey was prominent as an avant-garde filmmaker in the 1970s and ‘80s. In collaboration with her husband, Peter Wollen, she co-wrote and co-directed:
• Penthesilea: Queen of the Amazons (1974),
• Riddles of the Sphinx (1977, perhaps their most influential film),
• AMY! (1980),
• Crystal Gazing (1982),
• Frida Kahlo and Tina Modotti (1982), and
• The Bad Sister.

In 1991, she returned to filmmaking with Disgraced Monuments, which she co-directed with Mark Lewis.

Friday 4 July 2014 at 10:30: Special Graduation Ceremony
Conferral of Medicine Degrees on the South African Cuban trainees at the UFS

Live streaming will be available on: http://www.ufs.ac.za/ufslivestreaming/

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