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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

Prof Hendrik Swart richly contributes to research of phosphors

2014-12-02

Prof Hendrik Swart
Photo: Merwelene van der Merwe

Since his appointment as the South African Research Chairs Initiative (SARChI) Chair, there has been a sharp increase in the number of papers and publications by Prof Hendrik Swart, Senior Professor in the Department of Physics at the University of the Free State (UFS). From January this year, he has already published 78 articles. Some of the journals that has published his work, includes:

• Nanotechnology (impact of 3.67)
• Dalton Transactions (impact of 4.097)
• Sensors and Actuators B: Chemical (impact 3.84)

“My biggest success, however, is the powerful group of researchers we have built over the years. Staff, postdocs and students – without them it would have been impossible. I am therefore much indebted to my groups on both the Bloemfontein and Qwaqwa Campuses.

“The good apparatus we acquired via a sponsorship from the National Research Foundation and Sasol is also one of the main reasons for this. The financial support I get from the university’s research office is of course also a contributing factor,” he says.

For the past 20 years, Prof Swart has been conducting research on any substance that glows. “I only adjust the focus to fit in with current trends,” he says.

Prof Swart believes that his research will make a contribution to the fundamental knowledge about phosphors, as well as to the training of good students for the academic and industrial world on the outside. For the man on the street, his research translates into better, brighter lights that use less energy.

His more recent research focuses on the development of nano-phosphors for light-emitting diodes (LEDS) and organic light-emitting diodes (OLED).

Prof Swart has presented papers on his research not only nationally, but all over the world – including countries in Europe and the East. Some of the most recent papers presented by him and his colleagues/postgraduate students include:

• Applications of AES, XPS and TOF SIMS to phosphor materials at die 15th European Conference on Applications of Surface and Interface Analysis 2013 in Forte Village Resort, Sardinia, Italy.
• Luminescent properties of phosphor nano thin films at the first International Symposium on Nanoparticles/Nanomaterials and Applications in Caparica (Lisbon, Portugal), where he was an invited speaker.
• Role of surface and deep-level defects on the emission of nano metal oxides at the 2014 NanoAfrica international conference, Vanderbijlpark, South Africa, where he delivered the keynote address.
• PHI systems and their modifications at KOVSIES at the PHI European User Meeting in Ismaning (Munich), Germany, where he was invited to speak.

Prof Swart also delivered the keynote address at the SETCOR International Conference on Smart Materials and Surfaces in Bangkok, Thailand. His lecture was titled, ‘Role of surface and deep-level defects on the emission and degradation of phosphor materials’.

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