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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

Fight against Ebola virus requires more research

2014-10-22

Dr Abdon Atangana
Photo: Ifa Tshishonge

Dr Abdon Atangana, a postdoctoral researcher in the Institute for Groundwater Studies at the University of the Free State (UFS), wrote an article related to the Ebola virus: Modelling the Ebola haemorrhagic fever with the beta-derivative: Deathly infection disease in West African countries.

“The filoviruses belong to a virus family named filoviridae. This virus can cause unembellished haemorrhagic fever in humans and nonhuman monkeys. In literature, only two members of this virus family have been mentioned, namely the Marburg virus and the Ebola virus. However, so far only five species of the Ebola virus have been identified, including: Ivory Coast, Sudan, Zaire, Reston and Bundibugyo.

“Among these families, the Ebola virus is the only member of the Zaire Ebola virus species and also the most dangerous, being responsible for the largest number of outbreaks.

“Ebola is an unusual, but fatal virus that causes bleeding inside and outside the body. As the virus spreads through the body, it damages the immune system and organs. Ultimately, it causes the blood-clotting levels in cells to drop. This leads to severe, uncontrollable bleeding.

Since all physical problems can be modelled via mathematical equation, Dr Atangana aimed in his research (the paper was published in BioMed Research International with impact factor 2.701) to analyse the spread of this deadly disease using mathematical equations. We shall propose a model underpinning the spread of this disease in a given Sub-Saharan African country,” he said.

The mathematical equations are used to predict the future behaviour of the disease, especially the spread of the disease among the targeted population. These mathematical equations are called differential equation and are only using the concept of rate of change over time.

However, there is several definitions for derivative, and the choice of the derivative used for such a model is very important, because the more accurate the model, the better results will be obtained. The classical derivative describes the change of rate, but it is an approximation of the real velocity of the object under study. The beta derivative is the modification of the classical derivative that takes into account the time scale and also has a new parameter that can be considered as the fractional order.

“I have used the beta derivative to model the spread of the fatal disease called Ebola, which has killed many people in the West African countries, including Nigeria, Sierra Leone, Guinea and Liberia, since December 2013,” he said.

The constructed mathematical equations were called Atangana’s Beta Ebola System of Equations (ABESE). “We did the investigation of the stable endemic points and presented the Eigen-Values using the Jacobian method. The homotopy decomposition method was used to solve the resulted system of equations. The convergence of the method was presented and some numerical simulations were done for different values of beta.

“The simulations showed that our model is more realistic for all betas less than 0.5. The model revealed that, if there were no recovery precaution for a given population in a West African country, the entire population of that country would all die in a very short period of time, even if the total number of the infected population is very small. In simple terms, the prediction revealed a fast spread of the virus among the targeted population. These results can be used to educate and inform people about the rapid spread of the deadly disease,” he said.

The spread of Ebola among people only occurs through direct contact with the blood or body fluids of a person after symptoms have developed. Body fluid that may contain the Ebola virus includes saliva, mucus, vomit, faeces, sweat, tears, breast milk, urine and semen. Entry points include the nose, mouth, eyes, open wounds, cuts and abrasions. Note should be taken that contact with objects contaminated by the virus, particularly needles and syringes, may also transmit the infection.

“Based on the predictions in this paper, we are calling on more research regarding this disease; in particular, we are calling on researchers to pay attention to finding an efficient cure or more effective prevention, to reduce the risk of contamination,” Dr Atangana said.

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