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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

Researchers international leaders in satellite tracking in the wildlife environment

2015-05-29

Ground-breaking research has attracted international media attention to Francois Deacon, lecturer and researcher in the Department Animal, Wildlife and Grassland Sciences at the UFS, and Prof Nico Smit, from the same department. They are the first researchers in the world to equip giraffes with GPS collars, and to conduct research on this initiative. Recently, they have been joined by Hennie Butler from the Department of Zoology as well as Free State Nature Conservation to further this research.

“Satellite tracking is proving to be extremely valuable in the wildlife environment. The unit is based on a mobile global two-way communication platform, utilising two-way data satellite communication, complete with GPS systems.

“It allows us to track animals day and night, while we monitor their movements remotely from the computer. These systems make possible the efficient control and monitoring of wildlife in all weather conditions and in near-to-real time. We can even communicate with the animals, calling up their positions or changing the tracking schedules.

“The satellite collar allows us to use the extremely accurate data to conduct research with the best technology available. The volume of data received allows us to publish the data in scientific journals and research-related articles.

“Scientific institutions and the public sector have both shown great interest in satellite tracking, which opens up new ground for scientific research for this university. Data management can be done, using Africa Wildlife Tracking (AWT) equipment where we can access our data personally, store it, and make visual presentations. The AWT system and software architecture provide the researcher with asset tracking, GPS location reports, geo-fencing, highly-detailed custom mapping, history reports and playback, polling on demand, history plotting on maps, and a range of reporting types and functions,” Francois said.

Data can be analysed to determine home range, dispersal, or habitat preference for any specific species.

Francois has been involved in multiple research projects over the last 12 years on wildlife species and domesticated animals, including the collaring of species such as Black-backed Jackal, Caracal, African Wild Dog, Hyena, Lion, Cheetah, Cattle, Kudu, Giraffe, and Black Rhino: “Giraffe definitely being the most challenging of all,” he said.

In 2010, he started working on his PhD, entitled The spatial ecology, habitat preferences and diet selection of giraffe (Giraffa camelopardalis giraffa) in the Kalahari region of South Africa.

Since then, his work has resulted not only in more research work (supervising four Masters students) but also in a number of national and international projects. These include work in the:

Kalahari region (e.g. Khamab Nature Reserve and Kgalagadi Transfrontier Park)
Kuruman region (Collared 18 cattle to identify spatial patterns in relation to the qualities of vegetation and soil-types available. This project took place in collaboration with Born University in Germany)
Woodland Hills Wildlife Estate and Kolomella Iron Ore – ecological monitoring
A number of Free State nature reserves (e.g. Distribution of herbivores (kudu and giraffe) and predators (camera traps)

Francois is also involved with species breeding programmes and management (giraffe, buffalo, sable, roan, and rhino) in Korrannaberg, Rustenburg, Hertzogville, Douglas, and Bethlehem as well as animal and ecological monitoring in Kolomella and Beesthoek iron ore.

Besides the collaring of giraffes, Francois and his colleagues are involved in national projects, where they collect milk from lactating giraffes and DNA material, blood samples, and ecto/endo parasites from giraffes in Southern Africa.

With international projects, Francois is working to collect DNA material for the classification of the nine sub-species of giraffe in Africa. He is also involved in projects focusing on the spatial ecology and adaptation of giraffe in Uganda (Murchison Falls), and to save the last 30 giraffe in the DRC- Garamba National Park.

This project has attracted a good deal of international interest. In June 2014, a US film crew (freelancing for Discovery Channel) filmed a documentary on Francois’ research (trailer of documentary). Early in 2015, a second crew, filming for National Geographic, also visited Francois to document his work.

More information about Francois’ work is available at the GCF website.

Read Francois Deacon's PhD abstract

Direct enquiries to news@ufs.ac.za.

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