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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

Top matriculants for Kovsies

2014-01-24

From left are: Saneliswe Khambule, Lungile Mkhungo, Jannie de Wet, Anje Venter, Siqiniseko Buthelezi and Abrille Beukes.
Photo: Hannes Pieterse

Hailing from top schools in KwaZulu-Natal (KZN), Naushad Mayat, Lungile Mkhungo and Siqiniseko Buthelezi share 20 distinctions between them. Leaving the province of the Zulu Kingdom for Bloemfontein, all three are at Kovsies to study as doctors.

Naushad obtained eight distinctions, an achievement that placed him in the top ten matriculants in KwaZulu-Natal. The former learner from Glenwood High School in Durban came fourth in the Umlazi District and tenth overall in the province. Enrolling for a degree in Medicine, he will join the list of outstanding health professionals Kovsies produce every year.

Lungile, who matriculated from Kingsway High School, attained seven distinctions and her average percentage was 90%. She received distinctions in English – 90%, IsiZulu – 94%, Mathematics – 83%, History – 92%, Physics – 89%, Life Sciences – 89% and Life Orientation – 93%. Lungile is not only clever, but also performed well in sports at her school, participating in netball, soccer and athletics. This future doctor is a proud resident of Wag-'n-Bietjie residence.

Siqiniseko made history at his school, Maritzburg College, becoming the first black Head Prefect at the 150-year-old school, the oldest boys' high school in KZN and one of the oldest schools in South Africa. A gifted learner excelling in sport, culture and academics, Siqiniseko obtained five distinctions (English, Afrikaans, Life Orientation, Accounting and Life Sciences). His sporting prowess has seen him captaining Maritzburg College's first rugby team, as well as the KZN Academy team.

The three are joined by fellow KwaZulu-Natal resident, Saneliswe Khambule, Namibian Abrille Beukes and Free Staters Anje Venter and Jannie de Wet.

Saneliswe, a former learner of Menzi High School in Umlazi, received five distinctions in her final-year exams. The Emily Hobhouse resident registered for a Forensic Science degree and plans on doing her doctoral studies in this exciting career field.

Abrille Beukes is another future doctor and is all the way from Windhoek in Namibia. Abrille obtained a ‘one’ in all her subjects, the highest possible mark in the Namibian school system. The Windhoek-born student received high levels in Mathematics, Accounting, Physical Science, Biology, Afrikaans and English. As second best student in her home country, she will register for a Medicine degree.

Anja, the Free State’s top achiever, received an average percentage of 93% in the matric final exams. The former Eunice student obtained nine distinctions, an achievement that placed her in the national top 100 matriculants. Anja enrolled for a BSc Actuarial Science degree and will be joined in class by former school friend, Jannie de Wet, who obtained a whopping ten distinctions. Jannie and Anja attended Universitas Primary School together, with Jannie finishing his school career at Jim Fouché High School, and just like Anja, he will also enrol for a BSc Actuarial Science degree.

Jannie obtained distinctions in Afrikaans, English, Mathematics, Mathematics (third paper), Life Orientation, Accounting, Physical Science, Life Science, Economics and Information Technology. Jannie is also the Volksblad and the University of the Free State’s 2013 Matriculant of the Year.

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