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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

An exceptional year at Kovsies — one of the most successful years in academic achievement

2014-12-04

The University of the Free State (UFS) had an exceptional year, with many staff members and students performing both nationally and internationally. Considerable progress has also been made in improving the academic standards of the university.

“So far, this has been one of the most successful years in academic achievement. The UFS now has the highest academic pass rate in years, partly as a result of the admission standards which were raised four years ago.

“We now also have the highest rate of research publications, one of the highest publication figures for scholarly books in history, three Mandela Rhodes scholars and several international communication awards”, says Prof Jonathan Jansen, Vice-Chancellor and Rector of the UFS.

“The university now attracts top professors from all over the country and other parts of the world and for the first time in many years, two researchers received A-ratings from the National Research Foundation (NRF). This is the first time in the history of the UFS that two A-ratings were awarded simultaneously. The most researchers ever were rated by the NRF this year. After the constant turmoil of a few years ago, Kovsies has now become one of the most stable campuses in South Africa,” Prof Jansen says.

The impartial findings of a recent survey of UFS stakeholders showed that our values are endorsed by 92%; 86% agrees with our vision; 81% agree with our goals; 77% agree with our transformation; 78% believe that we are inclusive; and 78% applauded our overall reputation index. “These figures are very different from a few years ago when the university experienced a crisis,” he says.

According to Prof Jansen, the UFS’s financial situation is one of the most stable of all universities in South Africa, with a strong balance sheet and growing financial reserves – way better than before. This is exactly the reason why the UFS received confirmation from the Independent Regulatory Board of Auditors (IRBA) this year that we complied with international standards of reporting for the financial year which ended on 31 December 2013.

“I am also pleased to report that the crisis in the delivery of health services in the Free State province has been resolved due to collaboration between the UFS Management (including the Dean: Health Sciences and Head of the School of Medicine), the Department of Health and the Premier, Mr Ace Magashule. Although the loss of skilled personnel is still a concern, the Dean and Head of the School of Medicine are recreating the Health Services Platform at Universitas Hospital. However, the academic training of no undergraduate medical student or any student in the Health Sciences was influenced by the crisis in the Universitas and Pelonomi Hospitals”, he says.

The UFS is regarded around the world as a model of transformation and reconciliation in the student body. The recent SRC elections are only the most visible example of how far we have come in terms of leadership diversity. “Not a week goes by in which other universities, nationally and abroad, do not come to Kovsies to consult with us on how they can learn from us and deepen their own transformations, especially among students”, Prof Jansen says.

“The UFS will continue its model of inclusive transformation which provides opportunities for study and for employment for all South Africans, including international students and colleagues. We remain committed to our parallel-medium instruction in which Afrikaans remains a language of instruction; we are in fact the only medical school in the country that offers education and training in Afrikaans and not only English. We provide bursaries and overseas study opportunities to all our students, irrespective of race. And our ‘future professors’ programme is richly diverse as we seek the academic stars of the future. But we remain steadfast in our goal of making the UFS a top world university in its academic ambitions and its human commitments,” Prof Jansen says.

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