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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

Resource Manual on Trafficking in Persons for Judicial Officers sees the light

2012-03-27

Judge Connie Mocumi, President of the South African Chapter of the International Association of Women Judges (SAC-IAWJ), during the launch of the Resource Manual on Trafficking in Persons for Judicial Officers.
Photo: Leonie Bolleurs
27 March 2012

On Human Rights Day the Department of Criminal and Medical Law in the Faculty of Law at the University of the Free State (UFS) hosted the launch of the Resource Manual on Trafficking in Persons for Judicial Officers compiled by the South African Chapter of the International Association of Women Judges (SAC-IAWJ).

The manual, which will be used by members of the South African judiciary, will equip officials in adjudicating the multifaceted crime of human trafficking.

“Presiding officers must be sensitised about the complexity of the crime. Human trafficking has many faces and presents itself in different ways. A person may for example be trafficked for sexual exploitation, forced labour, the removal of body parts, as well as forced marriages. Expert knowledge is needed to handle these cases effectively in court,” said Dr Kruger, also responsible for the human trafficking initiative in the Unit for Children's Rights at the UFS.

Prior to the launch, a total number of 300 judicial officers, including six judges from the Southern African Development Community (SADC) received training on human trafficking. After receiving this training, the officers were sensitised to scrutinise domestic violence cases as well as inter-country adoption cases in order to identify possible human trafficking activities.

As keynote speaker at the launch, Dr Beatri Kruger from the Department of Criminal and Medical Law at the UFS, said that human traffickers were running operations like a well-oiled machine. They have abundant and sophisticated resources and often bribe corrupt officials to further their criminal activities. In South Africa, people combating human trafficking struggle with a lack of resources as well as comprehensive legislation. Most cases are prosecuted under the Children’s Act and the Sexual Offences Amendment Act of 2007. Unfortunately, this legislation still leaves a gap in the prosecuting of perpetrators. Only trafficking cases where where children are trafficked can be prosecuted under the Children’s Act. In terms of the Sexual Offences Amendment Act perpetrators can be prosecuted for trafficking persons for sexual exploitation only, and not for labour of other forms of trafficking. Therefore the comprehensive Prevention and Combating of Trafficking in Persons Bill 2010 needs to be finalised to cover all forms of trafficking.

There are more slaves today than at any time in the history of humankind. “To combat this serious problem, we need to follow a holistic approach,” said Dr Kruger. This includes prevention (raising awareness), effective prosecution and suitable punishment, the protection of victims, and partnering with all relevant stakeholders, including people in the communities. Community members are often whistle blowers of this crime.

The President of the SAC-IAWJ, Judge Connie Mocumi, handed copies of the manual, a three-year project, to judicial officers present at the launch. The manual covers, among others, the definition of trafficking in persons, trafficking in persons in South Africa and the Southern African region, a legislative framework, victims’ rights and criminal proceedings.

“It is critical that judicial officers appreciate the phenomenon of trafficking in persons in its broader socio-economic context. Therein lays the ability to deal competently with the often-nuanced manifestation of this scourge. The incapacity to recognise these nuances can deny victims access to justice. In that regard, the manual, amongst others, is to become an important empowering adjudication tool for judicial officers,” said Judge Mocumi.

More copies will be printed and be ready for distribution by the beginning of May this year.

Judge Belinda van Heerden, who also attended the launch, said: “There is progress on the judicial and legislative front to bring wrongdoers to book. This manual will go a long way in giving judicial officers insight into the problem.”

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