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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

2011 Leadership group meets for the first time

2011-08-01

Photo: Hannes Pieterse

The long application process, panel interviews and nail-biting wait finally came to an end the past week, when the cream of our first-year class of 2011 gathered in the Scaena Theatre on our Bloemfontein Campus, for their first group meeting as the selected Leadership for Change cohort.

These 150 students, from all our faculties, will over the following year be groomed to be leaders, not only at the university, but also in their respective fields and chosen careers.
The first group of students will depart for their respective universities in America and Europe on 22 September 2011, where they will spend two weeks. The second group of students will depart for universities in Japan in January 2012.

Although they have all passed a gruelling selection process, the real hard work is only starting now for these bright young students.

The programme will take place in four phases. During the preparation phase, which has now kicked off, students are prepared for the experience ahead, while being made aware of exactly what to expect from the programme.

In the study-abroad phase, students will be placed at 15 partner institutions in various countries, and will be divided into groups of six to twelve people. According to Prof. Aldo Stroebel, Director of International Academic Programmes, the groups will be diverse, in that there will be a mix of races, genders and study fields, which should guarantee dynamic interaction.

During the group’s first meeting this week, they were informed of the important goals of the Leadership for Change Programme, by Mr Rudi Buys, Dean of Student Affairs.

He imparted the gravity of their selection on the students by saying, “You may not get it yet, but I understand the reason we are all here. I understand that by looking at what you achieve after this programme, we can tell what the country could possibly achieve in the future. It is immensely moving to see the way you all carry yourselves, since I can see something special and unique in each of you.”
“You are all here, not because of which school you went to, or your race, or who your parents are, but because you all show potential to be something great.”

Prof. Stroebel reminded the group that despite the excitement that they all have about visiting universities in America, Europe and Asia, these visits should be seen as study trips.

“You may have three days to acquaint yourselves with the surroundings, but after that there will be very little sightseeing and a lot of hard work.”

They will participate in programmes designed by their respective host institutions, aimed at exposing them to different cultures, lifestyles and beliefs.

They will be accompanied by our staff, who Prof. Stroebel says will grow with the students, as they will be expected to guide the students through their tasks and assignments and interact with them on a daily basis.

Upon their return, there will be a debriefing phase, during which they will be expected to provide feedback on their experiences, as well as submit assignments which they will be assigned at their respective institutions.

The final phase is known as the impact phase, as this will see the students apply what they have learned in a positive manner and help drive the university to the future and to becoming a world-leading tertiary institution.

Media Release
1 August 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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