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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

Dr Oprah Winfrey praises our university

2011-08-24

Dr Oprah Winfrey after receiving her honorary doctorate degree.
Photo: Rian Horn

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Video clip

Transcription (pdf document)

“I came 8 000 miles to say, thank you, Vrystaat!” and “God bless South Africa,” were the words Dr Oprah Winfrey used yesterday to respectively open and close her address to an overflowing Callie Human Centre on our Bloemfontein Campus.

Our university awarded an honorary doctorate in Education to Dr Winfrey during a stately, yet warm and cheerful affair yesterday, which saw the 4 500 seater Callie Human Centre packed to the rafters with adoring fans, staff members and students.

The honorary doctorate is in recognition of her unparalleled dedication to improving the lives and futures of so many by improving education and ensuring that it is accessible to all. Through her award-winning show, The Oprah Winfrey Show (which concluded this year after 25 years of entertainment and service), and the various charity organisations she has established, Dr Winfrey has harnessed the power of her iconic stature in the struggle to eradicate poverty and make education accessible to all.

The ceremony’s audience was entertained by South African music legend, Ms Sibongile Khumalo, the Bloemfontein Children’s Choir, Bartimea School for the Deaf and Blind’s Sign Language Choir, and several other musical performers as well as dancers.

Dr Winfrey could not hold back her tears when Mr John Samuel, interim Director of our International Institute for Studies in Race, Reconciliation and Social Justice, described her as an “honorary daughter of South Africa”. She proved just how much the country means to her when she joined in the singing of the South African national anthem, Nkosi Sikeleli, despite struggling with the words in some parts.

According to Dr Winfrey, her interest in our university began after she had read an article by Prof. Jonathan Jansen, Vice-Chancellor and Rector, in which he emphasised the need for South Africans to stop accepting mediocrity, if ever the country is to develop to its full potential.

She asked Mr Samuel to convey her message of support to Prof. Jansen and the wheels, which led to today’s great event, were set in motion.

She also expressed her admiration of the transformation process at our university and our commitment to “reconciliation, peace and harmony”. “What has happened at the University of the Free State is nothing short of a miracle and this is truly what the New South Africa is about,” she said to loud cheers from the audience.

To emphasise her point, she called the five workers from the Reitz video to the stage and used their forgiveness and acceptance of the students responsible for the video as an example of the healing achieved at the UFS.

“Having seen this forgiveness has allowed me to expand my vision of what we can be.” She also delivered a message of encouragement and reminded students that anyone, despite their circumstances and background, could become successful and grow to overcome their obstacles, as she had done.

“Anyone can be successful if they put their mind to it, work hard and are diligent,” she said. “We must all strive for more than success, though, and fulfil the highest expression of ourselves as humans by realising who you are and what you are meant to be.”

Following her address, Dr Winfrey answered several questions from our students, giving them advice on, among other things, how to choose a career that is right for them, and good characteristics to look for in leaders and peers.

She also mentioned that several learners from the Oprah Winfrey Leadership Academy, which has its very first group of Grade 12 learners this year, would be visiting our university next month in order to help them select a university to attend next year.

Media Release
25 June 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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