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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

New Rector and Chancellor inaugurated at UFS

2003-02-07

NEW RECTOR AND CHANCELLOR INAUGURATED AT UFS

Newly inaugurated Rector and Vice-Chancellor of the University of the Free State, Prof Frederick Fourie, has recommitted the university to the service of the broader community, through the pursuit of academic excellence and contributing to building a non-racial, democratic and just South Africa.

To make this a reality Prof Fourie proposed a social contract or accord between university constituencies and the community to chart the way forward to establishing a university that can meet the challenges of a developing democracy.

Prof Fourie was speaking at his inauguration ceremony on the Bloemfontein campus, where the former Ambassador to the United States, Dr Franklin Sonn, was also inaugurated as Chancellor of the UFS.

The twin inauguration ceremony – the first in the history of the UFS - was attended by former President Nelson Mandela, Education Minister, Kader Asmal, Free State Premier Winki Direko, and the executive mayor of Mangaung, Mr Pappie Mokoena, who all endorsed the appointments as evidence of the transformation of the UFS.

According to Prof Fourie, the greatest contribution that any university could make to social and economic development in South Africa was by being an excellent university that encouraged critical inquiry, scientific knowledge as well as community service.

“So whilst we cherish and foster the continuity of the university as part of the ageold international tradition of universities, this University embraces its particular role in this country now, embraces the changes in the form and scope of its role in this crucial period of our history. We are committed to making a real difference to the new nation,” he said.

His vision for the UFS was “to be a university of excellence, equity and innovation – a leader in research, teaching, community service, adult learning, transformation, non-racialism, non-sexism, multi-culturality and multilingualism – a contributor to our country and our continent’s growth and development – a truly South African university”.

Prof Fourie said the recent incorporation of the Qwaqwa campus of the University of the North into the University of the Free State, which is the first such incorporation to take place, would contribute to broadening access for poor communities to higher education. Introducing an innovation to the inauguration ceremony, Prof Fourie and the UFS staff pledged to their commitment to excellence and justice, quality and equity. Fourie is the 13th Rector of the University of the Free State, succeeding Prof. Stef Coetzee, and Dr Sonn is the 6th Chancellor, succeeding Ms Winkie Direko, Premier of the Free State.

In his inaugural address, Dr Sonn said the significance of today’s ceremony was that the UFS - as a former institution of the Afrikaner – had chosen to walk the path of justice and not merely survival. “This university has seemingly liberated itself. It is inclusively South African.

He said the academic community must play its role of vigilance and not indifference”. Referring to the stature of former president Mandela in international affairs, Dr Sonn said: “We must bring the weight ot science and critical analysis and interpretation to bear in support of Madiba and other moral giants.”

Inauguration Speech by Prof. Frederick C.v.N. Fourie (PDF format)

Inauguration Speech by Dr Franklin A. Sonn (PDF format)

Statement by the Minister of Education, Professor Kader Asmal (PDF format)

Speech by Prof. Viljoen (PDF format)

Speech by Executive Mayor Mokoena - Mangaung Local Municipality (PDF format)

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