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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 receives R13,7 Million for Research into Prehistoric Organisms

2007-03-27

Some of the guests attending the launch of the research contract are: Dr Siyabulela Ntutela (Deputy Director: Biotechnology at the Department of Science and Technology), Dr Godfrey Netswera (Manager of Thuthuka and the Support Programme at the National Research Foundation (NRF)), Dr Esta van Heerden (Platform Manager and lecturer at the Department of Microbial, Biochemical and Food Biotechnology at the UFS), Mr Butana Mboniswa (Chief Executive Officer of BioPAD), and Mr Vuyisele Phehani (Portfolio Manager for BioPAD).
Photo: Leonie Bolleurs

The University of the Free State (UFS) has been awarded a massive R13,7 million contract to conduct research into prehistoric micro-organisms which live under extreme conditions, for example in mineshafts.

This is one of the biggest research contracts awarded to the UFS in recent years.

The biotechnology research contract was awarded to the UFS by BioPAD, a South African biotechnology company that brokers partnerships between researchers, entrepreneurs, business, government and other stakeholders to promote innovation and create sustainable biotechnology businesses.

The project is endorsed by the Department of Science and Technology and the National Research Foundation (NRF), which contributes to the bursaries of the 17 postgraduate students on the programme.

The contract involves the establishment of a Platform for Metagenomics - a technique which allows researchers to extract the DNA from microbes in their natural environment and investigate it in a laboratory.

“Through this platform we will be able to understand deepmine microbial populations
and their potential application in the search for life in outer space. It is most likely
that, if life were to be found on other planets in our solar system, it would probably
resemble that which existed millions of years ago on earth. Apart from all this, these
organisms have unique properties one can exploit in biotechnological application for
South Africa and its community,” said Dr Esta van Heerden, platform manager and
lecturer at the UFS Department of Microbial, Biochemical and Food Biotechnology.
She is assisted by her collegues, Prof. Derek Litthauer and Dr Lizelle Piater.

“The platform aims to tap into the unique genetic material in South African mines
which will lead to the discovery of new genes and their products. These new and unique products will find application in the medical field (anti-cancer, anti-bacterial en anti-viral cures), the industrial sector (nanotechnology, commercial washing agents and the food industry), environmental sector (pollution management, demolition of harmful metals and other toxic waste),” said Dr Van Heerden.

According to Dr Van Heerden, the Metagenomics Platforms stems from the Life in
Extreme Environments (LExEN) programme which was started in 1994 by Princeton
University in the United States of America (USA) in South African mines with grants
from among others the National Aeronautics and Space Administration (NASA) and
the National Science Foundation (NSF) in the USA. Other international collaborators
on the project include Geosynec Consultants Inc. (USA), Oak Ridge National
Laboratory (USA), the University of Tennessee (USA) and in South Africa the
Universities of the Witwatersrand, North West and Limpopo and companies like BHP
Billiton, MINTEK and mining companies like Harmony, Gold Fields and AngloGold
Ashanti.

The research field laboratory of the Metagenomics Platform, which was situated in
Glen Harvey, was moved to the Main Campus of the UFS in Bloemfontein. “In this
way the university has become the central hub for all research programmes. We are
also the liaison between the LExEN programme and the various mining companies
involved,” said Dr Van Heerden. The new laboratory was introduced during the
launch of the research contract.

“Our decision to commit BioPAD to this project stems from the company’s commitment to advance human capacity development to strengthen South Africa’s research infrastructure. It is also part of our aim to create and protect intellectual property,” said Mr Butana Mboniswa, Chief Executive Officer of BioPAD.

Talking on behalf of the UFS senior management, Prof. Teuns Verschoor, Vice-Rector
of Academic Operations, said that the university shares the excitement to be part of
the exploration of unknown forms of life, the discovery of new genes and
their products and in applying newly gained knowledge to better understand our
universe.

Media release
Issued by: Lacea Loader
Assistant Director: Media Liaison
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: loaderl@ufs.ac.za
27 March 2007

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