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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

UFS attracts excellent and diverse students

2015-08-20

Matshediso Mokoena and Thato Monkoe.
Photo: Thabo Kessah

When Thato Monkoe and Matshediso Mokoena sat for their final matric examinations in 2014, all they had on their minds was not just passing, but passing well. Little did they know at that time that passing well would place so much responsibility on their shoulders.

Both Thato and Matshediso come from rural and disadvantaged backgrounds. They are first-year students at the Qwaqwa Campus of the University of the Free State, and are the first in their respective families to study at a university.

Thato describes his situation as “sad and good at the same time”.

“It is good, because I am the first one at home to have completed my matric and to have gone on to study at a tertiary institution. At the same time, it is sad as I feel sorry for my siblings who, for various reasons, did not have similar opportunities when they opted out of school”, said Thato, a BEd student.

”Now my sister and brother, as well as the entire family, perceive me as the one with brains, and this makes me uncomfortable. However, I am up for the challenge to be the first one to graduate with a degree in my family”.

Matshediso Mokoena, a BSc student, who obtained distinctions in Mathematics, Physical Sciences, and Life Sciences last year, concurs with Thato.

”As much as my family is supportive, there is always pressure as they expect the best from me,” she said.

“The pressure does not only come from my family. My entire community looks up to me, and they can’t stop talking about my achievements”, Matshediso revealed.

Both Thato and Matshediso are, however, happy that the dark cloud of doubt about academic achievement in their families has finally disappeared.

“At least someone in my family is hard at work carving her future, and willing to set a good example. That person is me”, said Matshediso, who aspires to be a medical doctor, and has a younger sister in Grade 8.

Thato and Matshediso are just two of hundreds of students making good use of the University of the Free State’s commitment to attract excellent and diverse students at both undergraduate and postgraduate levels, as reflected in the Strategic Plan 2015-2020.

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