Latest News Archive

Please select Category, Year, and then Month to display items

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

Projects of the South Campus inspire excellence

2014-12-18

The University of the Free State’s (UFS’s) South Campus in Bloemfontein runs several projects to make a difference in the lives of learners and educators in the central region. These projects are based on the very essence of the UFS – to ‘inspire excellence, change lives’.

Three projects which have been very successful since the outset are the UFS Schools Partnership Project, the Family Math and Family Science Project and the Internet Broadcast Project.

The Schools Partnership Project attempts to empower teachers by improving their teaching skills in critical Gr 10 – Gr 12 subjects (Physical Science, Mathematics and Accounting).

Poorly performing schools are invited to join in the programme. A mentor, providing guidance to teachers in the planning of lessons, transferring knowledge and creating a healthy learning environment in the classroom, is assigned to each subject teacher. Management and leadership skills are also improved.

Hercules Dreyer, Programme Manager, says the success of the programme can be seen in the lessons, the results and the progress which have been made.

“In 2013, the pass rate of participating schools has grown from 71.5% to 85%. We had an increase in donors and the project went from 22 schools with 12 mentors in 2013 to 72 schools and 34 mentors in 2015.”

The UFS Family Math and Family Science Project, which is already in its sixth year of existence, are extremely popular. This intervention programme focus on bringing about a better understanding of Mathematics and Science in learners, teachers and parents.

Dr Cobus van Breda, Programme Director of the Family Math and Family Science Project, says that judging by the feedback from teachers, it is evident that the programme is growing from strength to strength and that it is making a real difference in Mathematics and Science education in the early school years.

The UFS’s Internet Broadcast Project (IBP) has thus far received four awards for their successes. In this project, lessons in Mathematics, Accounting and Physical Science are broadcasted from the UFS’s South Campus through internet presentations to schools in rural areas.

“To date, the IBP catalogue contains over 2 000 video lessons and in 2013 alone, the 68 schools accessed and used these videos 69 305 times. The project has the potential to reach more than 40 000 learners and 1 765 teachers every week,” says Sarietjie Musgrave, Project Manager.

Back

Economic and Management Sciences

Education

Health Sciences

The Humanities

Law

Natural and Agricultural Sciences

Theology and Religion

Open Distance Learning

Business School

We use cookies to make interactions with our websites and services easy and meaningful. To better understand how they are used, read more about the UFS cookie policy. By continuing to use this site you are giving us your consent to do this.

Accept