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

Exciting open day and Albert Einstein program at Boyden Observatory

2005-05-06

National Science Week, which will be held from 7-14 May 2005, is an annual country-wide celebration of science, led by the Department of Science and Technology. The department selected a proposal by the Boyden Science Centre to coordinate a week of activities in the Bloemfontein area as one of the many projects in the country.

The project for Bloemfontein and surrounding areas will be delivered though a collaboration between the National Museum in Bloemfontein and the University of the Free State (UFS), including the Research Institute for Education Planning, the Department of Physics and other departments in the Faculty of Natural and Agricultural Sciences.

The purpose of National Science Week is:

to create awareness of the important role that science play in people’s daily lives;
to encourage our youth to consider studying and improving their performance in mathematics and science; and
to attract more of our youth into science, engineering and technology (SET) careers.

World Year of Physics and Albert Einstein Program at Boyden Observatory

The International Union of Pure and Applied Physics (IUPAP) declared the year 2005 as the World Year of Physics (WYP). In recognition of this declaration, the great contribution of Physics to the development of technology, and its importance in our everyday lives will be featured strongly during the National Science Week 2005.

On Saturday 7 May 2005 there will be a public programme at Boyden Observatory from 15:30 as a contribution to the World Year of Physics. The programme will be presented in collaboration with the Bloemfontein branch of the Astronomical Society of Southern Africa and will include short presentations on astronomy, space exploration and the sun.

The main presentation will be at 19:00 the evening on the life and work of Albert Einstein. The programme will also include observing sessions through telescopes of objects like the sun, Jupiter and Saturn. There will also be an exhibit on Albert Einstein. Attendance is free but booking is required. For bookings, phone 051-4012561.

Public lecture programme:

Next week the following exciting public lectures will be presented as part of the Science Week activities:

Monday 9 May 2005

National Museum:

A discussion on Apocalypse Then: the greatest mass extinction of all time. The lecture will be presented by Dr Jennifer Botha, Paleontologist at the National Museum.
Bookings: 051-4479609 (entrance is free).

UFS campus:

All lectures at Kine 2, Medical Faculty, UFS campus. Follow directions from the DF Malherbe Road entrance.
Bookings: 051-4012561 (entrance is free).

Tuesday 10 May 2005:

A discussion on the Tsunami disaster of 26 December 2004 at 19:30 (UFS campus, Kine 2 Medical Faculty).

Wednesday 11 May 2005:

A discussion on Is there life out there? at 19:30 (UFS campus, Kine 2 Medical Faculty).

Friday 13 May 2005:

A discussion on Hunting Black Holes at 19:30 (UFS campus, Kine 2 Medical Faculty). The lecture will be presented by Dr Phil Charles, Director: South African Astronomical Observatory.

Science awareness day at the National museum

The science week will be concluded on Saturday 14 May 2005 with a special Science Awareness Day at the National Museum, Aliwal Street, Bloemfontein.

The excellent exhibits at the museum will be supplemented with activities, career information and video shows. The duration of the programme will be from 10:00-16:00. For enquiries, please call 051-4479609.

Issued by:  Lacea Loader
   Media Representative
   Tel: (051) 401-2584
   Cell: 083 645 2454
   E-mail: loaderl.stg@mail.uovs.ac.za

6 May 2005

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