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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

Lots of inspiration at Autumn Graduation Ceremony

2013-04-18

Graduates celebrate the results of years of study at the graduation ceremony on the Bloemfontein Campus.
Photo: Hannes Pieterse
17 April 2013

Live streaming of ceremonies available from 16 April - 19 April 2013: http://www.ufs.ac.za/ufslivestreaming/

Joshua Johnson YouTube video

The university’s Autumn Graduation Ceremony got off to a vibrant start with energetic performances and inspiring messages for graduates.

Joshua Johnson, an American student who uses his talent for tap-dancing to fund his tertiary education, mesmerised the audience on the first of the four-day graduation ceremony with his story of hope and perseverance. The student from Penn State University travels five hours by bus to New York every weekend where he tap-dances on the subway trains to earn money for his tuition fees.

Delivering a keynote address, Joshua told graduates that, in order to achieve their goals, they have to understand and work diligently with the 24 hours they get to live daily. “Start with a bang and end with a bang,” he said, encouraging the audience in the nearly-packed Callie Human Centre to join him in a rhythmic tap-dancing beat.

“Don’t follow in the footsteps of someone else. Take the beat of life, but add your rhythm to it," his wise words resonating with the exhilarated graduates.

Joshua will be the guest speaker at the ceremonies on 16, 17 and 19 April 2013 and will deliver a dance item during each occasion.

Dr Khotso Mokhele, Chancellor of the University, echoed Joshua‘s message, telling graduates not to be discouraged by life’s difficulties.

“Take what you have learned over the last three or four years and use that knowledge to reach your goal,” he advised.

Prof Jonathan Jansen, Rector and Vice-Chancellor, encouraged them to continue to study. “To break the cycle of poverty, get an education, get a degree.” He told them that as graduates they are ten times more likely to get a job, with the odds rising as they continue their postgraduate studies.

Well-known radio host and Idols South Africa judge, Gareth Cliff, will be the guest speaker at two ceremonies on 18 April 2013. He will be joined by Vicus Visser, the South African YouTube singing sensation. Dubbed Bloemfontein’s Justin Bieber, Vicus and his brother Vincent will perform during these two ceremonies.

The programme for the respective ceremonies is:

Wednesday 17 April

09:30 Diplomas and certificates up to and including honours degrees in the Faculty of Education.
14:30 Diplomas and certificates up to and including honours degrees in the Faculties of Health Sciences, Law and Theology.

Thursday 18 April

09:30 Diplomas and certificates up to and including honours degrees in the Faculty of Natural and Agricultural Sciences: only Agricultural Sciences and Architecture.
14:30 Diplomas and certificates up to and including honours degrees in the Faculty of Natural and Agricultural Sciences: only Natural Sciences.

Friday 19 April

09:30 Diplomas and certificates up to and including honours degrees in the Faculty of Economic and Management Sciences: all diplomas and degrees in the Faculty, except BCom and BComHons.
14:30 Diplomas and certificates up to and including honours degrees in the Faculty of Economic and Management Sciences: only BCom and BComHons.

The Qwaqwa Campus’ graduation ceremony will take place on 8 June 2013. Diplomas/certificates up to and including doctorates will be awarded at this ceremony.

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