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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

In January 1, 2003, the Qwa-Qwa campus of the University of the North (Unin) was incorporated into the University of the Free State (UFS).

2003-02-07

FREDERICK FOURIE

IN January 1, 2003, the Qwa-Qwa campus of the University of the North (Unin) was incorporated into the University of the Free State (UFS).

While this is merely the beginning of a long and complex process, it does represent a major milestone in overcoming the apartheid legacy in education, realising the anti-apartheid goal of a single non-racial university serving the Free State.

The incorporation is also part of the minister's broader restructuring of the higher education landscape in South Africa - a process which aims to reshape the ideologically driven legacy of the past.

In contrast to the past educational and social engineering that took place, the current process of incorporating the Qwa-Qwa campus of Unin into the UFS is informed by three fundamentally progressive policy objectives, clearly outlined in the education white paper 3: (A framework for the transformation of higher education):

To meet the demands of social justice to address the social and structural inequalities that characterise higher education.

To address the challenges of globalisation, in particular the role of knowledge and information processing in driving social and economic development.

To ensure that limited resources are effectively and efficiently utilised, given the competing and equally pressing priorities in other social sectors.

Besides informing the way the UFS is managing the current incorporation, these policy objectives have also informed the transformation of the UFS as an institution over the past five years.

In 2001, former president Nelson Mandela lauded the success of the UFS in managing this transformation, by describing the campus as a model of multiculturalism and multilingualism. This was at his acceptance of an honorary doctorate from the UFS.

Indeed our vision for the Qwa-Qwa campus as a branch of the UFS is exactly the same as it is for the main UFS campus - a model of transformation, academic excellence, community engagement and financial sustainability, building on the histories and strengths of both the Qwa-Qwa campus and the UFS (Bloemfontein campus).

Realising this vision will be a giant leap forward in establishing a unified higher education landscape in the Free State.

In more concrete terms, the UFS is working towards this vision by focusing on the following areas of intervention: access and equity; academic renewal; investment in facilities; and sound financial management.

These interventions are being made not to preserve any vestiges of privilege or superiority, but precisely to increase access for students from poor backgrounds and to promote equity and representivity among all staff.

The current growth phase of the UFS has seen student enrolment almost double over the past five years, in particular black students, who now constitute approximately 55 percent of the student population of nearly 18 000 (including off-campus and online students).

But it has not just been a numbers game. Our approach has been to ensure access with success.

Our admissions policy, coupled with the academic support and "career preparation" programmes we offer, have resulted in significant successes for students who otherwise would not have been allowed to study at a university.

This will be continued at Qwa-Qwa as well.

Our academic offerings too have undergone dramatic change. We have become the first university in the country to offer a degree programme based on the recognition of prior learning (RPL).

This is not just a matter of academic renewal but of access as well, especially for working adults in our country who were previously denied a university education.

As for the sound financial management of the UFS (including the Qwa-Qwa campus), this is being done not for the sake of saving a few rands and cents, but for the greater value to our society that comes from having sustainable institutions.

It is sustainable universities that can make long-term investments to fund employment equity, provide information technology for students, upgrade laboratories, construct new buildings, develop research capacity, and provide a safe environment for students and staff, as is happening now at the UFS.

As a result of such management, a practical benefit for prospective students at the Qwa-Qwa campus of the UFS will be lower academic fees in some cases compared with the Unin fees.

As is the case with all these processes, there are concerns from staff and students at Qwa-Qwa and the broader community of the region that the Qwa-Qwa campus serves.

To get the campus viable and to ensure its continuation in the short term, tough choices had to be made by the minister of education regarding which programmes to offer and fund.

But we have been encouraged by the community's understanding that these concerns can be addresed over time as the campus becomes financially viable.

Meetings between the top mangement of the UFS and community representatives, staff and students at Qwa-Qwa have laid the basis for building a climate of trust in such a complex process.

We should not be captives of the past divisions but build this new unified higher education landscape that can meet our country's developmental needs.

It should be a higher education landscape that is based on broadening access, promoting equity and social justice, developing academic excellence, and the effective and efficient management of scarce resources. This should be our common common objective.

Professor Frederick Fourie the rector and vice-chancellor of the University of the Free State (UFS)

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