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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

Researcher finds ways to serve justice efficiently

2016-01-07

Prof Monwabisi Ralarala tackled the serving of justice from a linguistic viewpoint.
Photo: Supplied

In 2012, local and international media was saturated with reports of the Eugène Terre’Blanche murder trial. At the judgment, Judge John Horn read a lengthy extensive document, of which three pages were dedicated to voicing his concern about how police officers distort statements in the process of translation. Considering the fact that statements are the entry points to the criminal justice system, Prof Monwabisi Ralarala’s attention was drawn to the negative impact such distortion had insofar as the administration of justice was concerned. Of the three PhD degrees conferred by the University of the Free State (UFS) Faculty of Humanities at the 2015 Summer Graduation, one was in Language Practice with Prof Ralarala’s name on it.

Prof Ralarala’s research interests in language rights, forensic linguistics, and translation studies led him to use the Terre’Blanche trial as the basis for his second PhD case study titled: Implications and explications of police translation of complainants' sworn statements: evidence lost in translation. The doctoral dissertation focused on police stations in the Xhosa-speaking community of Khayelitsha in Cape Town.

Language and the law

When the victim of a crime approaches the South African Police Services (SAPS), the requirements are that a sworn statement be taken. However, as a prerequisite, the narration needs to be translated into English. “The process unfolds in this manner: the complainant or the person laying the charges speaks in a language that they understand, and then the police officers translate that information into English because English is still the de facto language of record,” explained Prof Ralarala.

In the process of translation, the original narrative is lost, and so is some of the evidence. “They [the statements] have to be packaged in a certain way, in the form of a summary. As a police officer, you have to discard all the original narrative and create another narrative which is in English,” added the Associate Professor and Institutional Language Coordinator at the Cape Peninsula University of Technology.

Evidence is the basis of any court case and, when it is translated by police officers who do not hold the credentials of professional translators, a problem inevitably arises.

Because police officers are not trained in translation, “Some of the statements are filled with distortions, changing of information all together. In some cases, one would come across a case which was initially an assault but then - through the change and transformation, re-narration, retelling of the story by someone else - it becomes a case of attempted murder.”

Considering that a statement determines a suspect’s fate, it becomes all the more important to ensure that accuracy is upheld.

His internal and external supervisors, Prof Kobus Marais and Prof Russel Kaschula from the UFS and Rhodes University respectively stated that his PhD work has been hailed as a gem by international scholars. “According to one international assessor, he has made an exceptional contribution to the humanities and social sciences in general and to the fields of linguistics and translation studies in particular.”

Reshaping the landscape

According to Prof Ralarala, there are huge gaps in the translated versions of statements which create a problem when a ruling is made. Some of the recommendations put forward in his dissertation to bridge that gap are:

• to review the language policy insofar as the criminal justice system is concerned. The languages we speak are official and constitutionally embraced, and they hold the same status as English, hence they need to be used in criminal justice processes;
• to revisit the constitution and review if the provisions made for the Nguni languages are implemented;
• to supplement paper and pen with technology such as tape recorders. Statements can be revisited in cases where a controversy arises;
• to deploy professional translators and interpreters at police stations;
• to design a manual for police officers which contains all the techniques on how a statement should be taken.
• to enforce constitutional provisions in order to reinforce the language implementation plan in as far as African languages are concerned .

These recommendations serve to undo or eliminate any perceived injustices perpetuated and institutionalised by current linguistic and formal practices in South Africa's criminal justice system.

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