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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 satisfied with proceedings of EFF National People’s Assembly

2014-12-17

The University of the Free State (UFS) is happy about another successful hosting of a political party; this time, the Economic Freedom Fighters (EFF). In the recent past (December 2012), the UFS hosted the African National Congress (ANC) with the same energy, support and selfless commitment as with the EFF.

“The fact that the EFF paid the required amount for the use of the university’s venues in full before the congress commenced, bears testimony to this. For the past two months, the UFS’s working team worked closely with the EFF’s logistics team to thoroughly plan for a smooth and successful National People’s Assembly,” says Dr Choice Makhetha, Acting Rector of the UFS.

The hard work and commitment invested in the preparation process paid off. The 1st EFF National People’s Assembly, held 13-16 December 2014 on the Bloemfontein Campus, was a huge success.

“It is with great excitement that I can report that all premises of the UFS have been left the way they were found on arrival; no damage to any property and no littering.”

“Thank you to the UFS staff members who worked selflessly on a daily basis: the cleaning staff who started very early in the morning and went home very late at night; garden staff who made sure that the grounds were exceptionally clean every day and the flowers bright; student volunteers who worked shifts of over 24 hours on the first day, making sure that EFF delegates were checked into residences; staff members at the Visitors Centre who were ready to share information about the university and provide support to EFF delegates; staff members at the Odeion (which served as media centre) who ensured that the national and international media houses were comfortable and that the media conferences ran smoothly; safety and security personnel who provided protection for all the people on campus and also ensuring safety of the buildings; the health and safety officers supported by our partners from ER24 emergency services; and the South African Police Services (SAPS). To the electricians, the plumbers and other colleagues from Physical Resources who assisted with any task, even beyond the call of duty, we say thank you. For all the support and extra miles travelled – we appreciate your passion for the work you do; you are all very important to us at the UFS.”

“As the University of the Free State, we would like to express our gratitude to the leadership of the EFF, the delegates, guests and partners, as well as the media houses. The level of discipline among delegates was impressive. The UFS staff members appreciate the level of professionalism and respect shown by the EFF leadership and delegates. All the best for the future!,” says Dr Makhetha.

The UFS will continue to host political parties, interest groups, associations and more in their diversity, provided there is availability of venues, events are held outside the academic period and payment is received well ahead of hosting. As a public institution of higher learning, the university has a responsibility to promote democracy and help deepen the principles thereof. A university is a perfect platform for differing views and diverse political formations to find expression.

“To the UFS community, thank you for the trust you showed in the working team as it prepared to host the EFF’s 1st National People’s Assembly. To Mangaung Metropolitan Municipality and the Free State Province – we appreciate the support. As the University of the Free State, we know we can always count on you!”, says Dr Makhetha.

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