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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 Communication and Brand Management receives two prestigious international awards

2015-07-07

Lelanie de Wet, Lacea Loader and Leonie Bolleurs

The Department of Communication and Brand Management at the University of the Free State (UFS) received two of the six Gold Quill Awards – that were awarded to South African companies and institutions - at the International Association of Business Communicator’s (IABC) Excellence Gala ceremony in San Francisco, US on 15 June 2015.

The awards ceremony formed part of the 2015 IABC World Conference, which took place from 14-17 June 2015. The department received a Gold Quill Excellence Award for its social media campaign, UFS #FaceOfFacebook and a Gold Quill Merit Award for the B Safe Take Action campaign.

From the 15 countries that entered, a total of 120 Gold Quill Excellence awards and 189 Gold Quill Merit awards were awarded. Other South African award winners included Barclays Africa Group Limited, Mediclinic and the Cape Peninsula University of Technology (CPUT).

This is the second year in a row that the UFS has been recognised by the IABC for its communication projects. In 2014, the department was awarded the Jake Wittmer Research Award for a Stakeholder Perception Audit conducted in February 2014. The audit was considered – by the IABC - as one of the best breakthrough strategies used by a university to measure the perceptions of its stakeholders.This made the UFS the first tertiary institution in Africa to receive the research award. The stakeholder perception audit also received an Africa Gold Quill in 2014.

"Being recognised by a global association such as the IABC for the second time, is a great honour and I am very proud of what my colleagues have achieved by entering the two campaigns. Winning the awards is a true indication of what can be done when a team of expert communicators is committed towards engaging their target audiences with campaigns that speak of quality and innovation. The fact that the UFS is one of only two tertiary education institutions in the country to receive these prestigious awards, makes it even more special," said Lacea Loader, Director: Communication and Brand Management at the UFS.

IABC World and Africa conferences 2015

The IABC is a global membership association with a network of 12 000 members in more than 80 countries, representing many of the Global Fortune 500 companies. It serves professionals in the field of business communication, bringing together the profession’s collective disciplines.

With the theme: Changing landscape: Informing the future, the 2015 world conference was attended by over 1 200 delegates from across the world. Delegates were offered an opportunity for learning, discovering, and connecting. Loader also made a presentation entitled ‘Award-winning measurement endorses sound reputation management strategy’ at the world conference.

The department will also be receiving two Africa Gold Quill Awards from the Africa chapter of the IABC for the same campaigns on 30 July 2015 in Johannesburg.

UFS #FaceOfFacebook Campaign

The university received a Gold Quill Excellence Award for its social media campaign, UFS #FaceOfFacebook. This initiative originated in the university’s commitment to its Human Project, which sets the standard for good behaviour and care.

Lelanie de Wet, Manager: Social Media and Website Content and project leader of UFS #FaceOfFacebook, said the project was born from the need to communicate with students. Thus a virtual friend, #FaceOfFacebook, was created. “Yearly auditions are being held to choose the new face representing the UFS on Facebook. Short video clips of the #FaceOfFacebook – whether it is attending events or communicating important messages - are posted on the UFS Facebook page. The successful candidate holds the title #FaceOfFacebook for 12 months.

“When I look at a campaign such as #FaceOfFacebook, from the time it took its first tentative steps in 2013, and see how it inspired staff and students alike, my heart swells with pride. Often you can see the impact you have made only in retrospect. The ripples you send into the world will inevitably create waves,” she said.

B Safe Take Action Campaign

The B Safe Take Action campaign of the university received a Gold Quill Merit award from the IABC.

The campaign was activated in September 2013. “It targeted on- and off-campus students and staff, aiming to create social ownership of personal safety, and to raise awareness of the safety measures put in place by the university,” said Leonie Bolleurs, Manager: Internal Communication and project manager of the campaign.

The campaign looked at a number of safety aspects, focusing not only on crime but also on being safe from road accidents and stress/burnout.

It is the second time this year that the BSafe campaign has been recognised for its innovative strategy. Earlier this year it received a PRISM Award (Gold) from the Public Relations Institute of Southern Africa (PRISA). The annual PRISM Awards are about recognising and celebrating great public relations campaigns.

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