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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 SIFE is the best in SA!

2004-07-09

The SIFE team celebrates their victory with Jack Shewmaker, founder of SIFE in 1975 and past-president of Walmart in the USA, and Moses Kgosana, Chairman of KPMG SA.

The Students in Free Enterprise (SIFE) team of the University of the Free State competed in the National SIFE championships on Thursday, June 17, 2004 at Ceasar’s Convention Centre in Johannesburg.

Strong competition was experienced from the other ten participant SA universities, e.g. the Universities of the Western Cape, Kwazulu-Natal, Cape Town and RAU, but die UFS SIFE team retained the national championship for the third year running.

The team will now represent South Africa and the University of the Free State in Barcelona, Spain at die SIFE World Cup. The competition will be held from 22 to 24 September 2004.

The presentation team members for the competition were Tsholofelo Tlhomelang, Imameleng Matete, Kenneth Lefa, Kabelo Lephaka, Nadia van Staden, Tshepo Mahloko (Multi-Media), Werner Schmidt (Faculty Advisor). Supporting the presentation team were Lineo Peete, Keketso Ntene, Ruth Morienyane, Motaung Mathaba, Tshireletso Seekoe, Peter Letsoalo, Obakeng Msuthwana, Tshepiso Lebentle, JC Langeveldt and Michelle Stanley.

SIFE is a world-wide non-profit organisation with the express aim of encouraging students to spread their business knowledge - gained in the classroom - to the community, to promote and expand the principles of free enterprise.( www.sife.org )

The criteria by which SIFE-projects are measured are the following:

• How free markets work in the global economy.
• How entrepreneurs succeed by identifying a market need and then profitably producing and marketing a product or service to fill that need.
• The personal entrepreneurial, communications, technology and financial management skills needed to successfully compete.
• Practicing business in an ethical and socially responsible manner that supports the principles of a market economy.
• Measuring the results of projects, utilizing mass media and the Internet, involving non-business majors and utilizing a Business Advisory Board, communicating the program through a written report and verbal presentation.

The UFS’ SIFE-team’s presentation complied with all the above mentioned criteria. SIFE UFS’ education drive stretched from primary school learners, to adults who had been working for thirty years – this diverse group was taught about the free market system and its value in the global village. Business ethics and basic business principles were communicated in a fun and interactive way to learners. High-level business advice was given to entrepreneurs who started new projects, e.g. a brick-maker, and marketing advice were given to existing businesses in need of expansion.

If you are interested in helping SIFE UFS achieve its goals, e-mail Werner Schmidt at
schmidtw.ekw@mail.uovs.ac.za or phone him at 051 – 401 3376.

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