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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 takes 70 first-year students to the USA

2010-08-20

Mr Rudi Buys (middle, with tie) with some of the students selected for the F1 Programme
Photo: Gerhard Louw

The University of the Free State (UFS) has announced the names of the first ever group of 70 first-year students that will travel to the United States of America (USA) as part of the university’s Student Leadership Development Programme.

This group of students will spend two weeks at universities in the USA to experience student life and learn about leadership and diversity at these universities.

“This is a first for not only the UFS, but also for South Africa and we are incredibly proud. The programme is unique to any other student leadership development programme in the country. We are leading the way and are taking students to live and learn amongst students at various universities across the USA,” said Mr Rudi Buys, Dean of Student Affairs at the UFS.

The programme was one of the goals of Prof. Jonathan Jansen, Rector and Vice-Chancellor of the UFS, which he aimed to realise when he was appointed by the UFS in 2009.

“With the programme we want to develop participants’ thinking and capacity to lead in the contexts of diversity and change and we hope to direct them to programmes leading change in student life in general upon their return,” Mr Buys said.

The 70 students will leave for the USA on 22 September 2010. After spending some time there and learning more about their American peers’ lives and culture, they will return to the UFS on 7 October 2010.

“We took great care in selecting the 70 participants. They are representative of all our students, as well as students from our Qwaqwa Campus,” said Mr Buys.

A rigorous selection process was followed, which focused on the students’ academic excellence, their participation in student- and residence-life programmes and their interest in growing in the areas of, amongst others, leadership, diversity and citizenship. Each candidate had to undergo a pre-selection process, followed by a panel interview consisting of staff from various faculties and divisions at the UFS.

The students will stay in groups of about ten at the various universities, which include universities such as Cornell University, New York University, the University of Massachusetts, the Appalachian State University and Virginia Polytechnic University. “These universities will provide our students with accommodation and will present various academic and cultural programmes which our students will participate in and learn from,” said Mr Buys.

“We have also put a programme in place to prepare our students thoroughly for the trip. Because some of them have never travelled on an aeroplane, let alone travelled to a foreign country, we have made arrangements with the Department of Home Affairs for assistance with travel documentation, as well as special arrangements with the USA Embassy for assistance with visas. They will also be attending workshops focusing on, amongst others, research, leadership and diversity before their departure on 22 September 2010.

“Upon their arrival in the USA the group of students will firstly be taken to Washington DC where they will be briefed about American customs, etc. From there they will be placed at the various universities,” said Mr Buys.

Upon their return the students must be involved in student-life programmes on campus, establish volunteer programmes and initiate and establish mentoring programmes for their fellow students. “We want them to give back what they have learnt and experienced,” said Mr Buys.

“We are planning on implementing the Student Leadership Development Programme as an annual programme and are looking forward to this incredible programme through which this group of first-year students will have the opportunity of a lifetime to be true ambassadors of South Africa and, in particular, the UFS, as they leave for the USA,” he said.

Media Release:
Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt@ufs.ac.za
20 August 2010

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