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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

Cardiology Unit involved in evaluation of drug for rare genetic disease

2013-01-04

Front from the left, are: Marinda Karsten (study coordinator and registered nurse),
Laumarie de Wet (clinical technologist), Charmaine Krahenbuhl (study coordinator and radiographer),
Lorinda de Meyer (administrator), Andonia Page (study coordinator and enrolled nurse);
back Dr Gideon Visagie (sub investigator), Dr Derick Aucamp (sub investigagtor),
Prof. Hennie Theron, (principal investigator) and Dr Wilhelm Herbst (sub investigator).
Photo: Supplied
09 January 2013

The Cardiology Research Unit at the University of the Free State (UFS) contributed largely to the evaluation of the drug Juxtapid (lomitapide), which was developed by the Aegerion pharmaceutical company and approved by the FDA (Federal Drug Administration). Together with countries such as die USA, Canada and Italy, the UFS’ Unit recruited and evaluated the most patients (5 of 29) for the study since 2008.

The drug was evaluated in persons with so-called familial homozygous hypercholesterolemia (HoFH).

Following its approval by the FDA, Juxtapid is now a new treatment option for patients suffering from HoFH. The drug operates in a unique way which brings about dramatic improvements in cholesterol counts.

According to Prof. Hennie Theron, Associate Professor in the Department of Cardiology at the UFS and Head of the Cardiology Contract Research Unit, HoFH is a serious, rare genetic disease which affects the function of the receptor responsible for the removal of low-density lipoprotein cholesterol (LDL-C) (“bad” cholesterol) from the body. Damage to the LDL receptor function leads to extremely high levels of blood cholesterol. HoFH patients often develop premature and progressive atherosclerosis, which is a narrowing or blockage of the arteries.

“HoFH is a genetically transmitted disease and the most severe form of hypercholesterolemia. Patients often need a coronary artery bypass or/and aortic valve replacement before the age of 20. Mortality is extremely high and death often occurs before the third decade of life. Existing conventional cholesterol-lowering medication is unsuccessful in achieving normal target cholesterol values in this group of patients.

“The only modality for treatment is plasmapheresis (similar to dialysis in patients with renal failure). Even with this type of therapy the results are relatively unsatisfactory because it is very expensive and the plasmapheresis has to be performed on a regular basis.

“The drug Juxtapid, as currently evaluated, has led to a dramatic reduction in cholesterol values and normal values were achieved in several people. No existing drug is nearly as effective.

“The drug represents a breakthrough in the treatment of familial homozygous hypercholesterolemia. The fact that it has been approved by the FDA, gives further impetus to the findings,” says Prof. Theron.

In future further evaluation will be performed in other forms of hypocholesterolemia.

According to Prof. Theron, the findings of the study, as well as the recent successful FDA evaluation, once again confirms the fact that the UFS’ Cardiology Contract Research Unit is doing outstanding work.

Since its inception in 1992, the Unit has already been involved in more than 60 multi-centre, international phase 2 and 3 drug studies. Several of these studies, including the abovementioned study, really affected the way in which cardiology functions.

The UFS’ Cardiology Contract Research Unit is being recognised nationally and internationally for its high quality of work and is constantly approached for their involvement in new studies.

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