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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

Report card for UFS outlines major achievements

2005-02-04

Staff at the University of the Free State (UFS) have received above-inflation increases in remuneration averaging 18,2 percent since the year 2000, according to the Rector and Vice-Chancellor, Prof Frederick Fourie.

Delivering a keynote speech at the Official Opening of the UFS today, Prof Fourie gave a report card for the UFS which he said indicated significant progress in salaries and promotions as well as capital expenditure and infrastructure development on the campus.

“The aggregate extra earnings of staff (money in their pockets above inflation) from 2000 to 2005 amount to R75 million in salaries. This is the result of the hard work of all staff and we pay tribute to them,” he said.

Prof Fourie said that several categories of staff are better off than before the financial turn-around strategy was implemented in 2000 which aimed to make the UFS a financially sustainable campus.

The lowest paid workers and professors had received an additional structural correction, which gave professors at the UFS a 27% above-inflation increase (on total remuneration package) since 2000.

He said there had also been a dramatic increase in promotions to associate professor and full professor during the last 6 years.

From 1999 to December 2001, there were only 9 promotions to associate professor. From January 2002 to January 2005, there were 37 such promotions to associate professor, four times as many.

Regarding promotions to full professor, from 1999 to December 2001 there were 7 promotions. From January 2002 to January 2005, there were 31 promotions to full professor, more than four times as many.

“We have also created a new category of senior professor to give due recognition to the outstanding work of our leading academics in many fields,” Prof Fourie said.

The UFS has introduced numerous new and innovative learning programmes, together with an increasing number of community service modules which enhanced the UFS as a leader in service learning and helped to make it a university engaged with its surrounding community.

According to Prof Fourie the number of support staff had also grown along with the professionalisation of the support services.

He said management was aware that there still several challenges regarding staff overload and staff development but that these were being addressed

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
4 February 2005

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