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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 hosts the first Southern African Young Scientists Summer Programme

2012-11-26

The University of the Free State is to host the first Southern African Young Scientists Summer Programme (SA-YSSP) from 1 December 2012 to 28 February 2013.

This will form part of an annual three-month education, academic training and research capacity-building programme jointly organised by the National Research Foundation (NRF), the Department of Science and Technology (DST), and the International Institute for Applied Systems Analysis (IIASA), based in Austria.

The NRF, as the National Member Organisation (NMO), in collaboration with DST, has developed a novel and innovative initiative with IIASA to establish the SA-YSSP. This programme was officially launched by the Minister of Science and Technology during November 2011.

IIASA is an international research organisation that conducts policy-oriented scientific research in the three global problem areas of energy and climate change, food and water and poverty and equity (www.iiasa.ac.at). South Africa’s engagements with IIASA, and specifically with regard to the SA-YSSP, relate primarily to the DST’s Ten-Year Innovation Plan.

Aligned with the YSSP model that is presented by IIASA in Austria annually, the SA-YSSP offers scientific seminars covering themes in both the social and natural sciences. These seminars often have policy dimensions and aim to broaden the participants’ perspectives and strengthen their analytical and modelling skills, further enriching a demanding academic and research programme (www.ufs.ac.za/sa-yssp).

Keynote lectures are to be delivered by national and international leaders in their respective research fields, partly drawn from IIASA’s widespread network of alumni and collaborators, as well as from the NRF’s extensive international networks of excellence.

The programme is to be enhanced with specific field trips and cultural and heritage excursions that will involve networking with locally based research programmes. Supervisory teams of both IIASA and South African experts will guide a cohort of competitively selected South African and international advanced Ph.D candidates.

The programme will be opened on 2 December 2012 at the Centenary Complex by the Minister of Science and Technology, Mr Derek Hanekom, the Director/CEO of IIASA, Prof Pavel Kabat and the Vice-Chancellor and Rector of the UFS, Prof Jonathan Jansen. They will be joined by a number of Nobel Prize Laureates and luminaries representing the government, the diplomatic sector and Higher Education.

The programme is directed by a multidisciplinary team at the UFS that includes:

Prof Aldo Stroebel and Prof Neil Roos (Co-Directors)

Prof André Roodt (Dean of SA-YSSP)

Prof Martin Ntwaeaborwa and Dr Henriëtte van den Berg (Deputy-Deans of SA-YSSP)

Dr Priscilla Mensah and Dr Sonja Loots (Strategic Managers)

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