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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

Regional Conference on Trafficking in Human Beings

2007-06-29

Trafficking in Human Beings:
National and International Perspectives

Date: 17th August 2007
Address: CR Swart Auditorium, University of the Free State, Bloemfontein, South Africa.

Every year thousands of children and adults become victims of trafficking and abuse in South Africa and throughout the southern African region. Victims are trafficked for a myriad of reasons: sexual exploitation, including prostitution and pornography; illegal labour, including child conscription; domestic servitude; illegal adoptions; body parts/organs; and forced marriages.

The Unit for Children’s Rights, Department of Criminal and Medical Law, University of the Free State (UFS), together with the Centre for Continuing Legal Education at UFS, will host a Regional Conference on Trafficking in Human Beings. The conference will bring together key role-players from the South African government as well as crucial international non-governmental organizations (NGOs) in the region.

Trafficking in human beings, especially women and children, is a serious violation of the human rights of the victims, as well as an extremely profitable source of income to organized crime, and needs the attention and intervention of both governmental and non-governmental institutions in South Africa.

Speakers will include representatives from the United National Office on Drugs and Crime (UNODC), the International Organization for Migration (IOM), the National Prosecuting Authority (NPA), the South African Law Reform Commission, the Unit for Children’s Rights-UFS, and NGOs Molo Songololo and Terre Des Homes, that work with child trafficking victims in South Africa and around the world.

The media are invited to report on the conference, and interview speakers and presenters Attached find programme. For more info contact the following persons.

1. Beatri Kruger - 051 401 2108 / email: krugerh.rd@mail.ufs.ac.za
2. Susan Kreston - 051 401 9562 / email: krestons.rd@mail.ufs.ac.za
3. Elizabeth Snyman – 051 401 2268 / email: snymane.rd@mail.ufs.ac.za

Programme

Trafficking in human beings:
National & international perspectives

Presented by The Unit for Children’s Rights, Department Of Criminal & Medical Law , Faculty of Law, in Conjunction with The Centre for Continuing Legal Education, University of the Free State.

Funded through the Generosity of the United States Department of State

17 AUGUST, 2007 – CR SWART AUDITORIAM

8:00-8:30 Registration & Tea
8:30-8:45 Opening & Welcome
Prof. JJ Henning, Faculty of Law
8:45-9:40 Overview & Global Perspective
Prof. Susan Kreston - Unit for Children’s Rights, Faculty of Law-UFS

9:40-10:00 TEA

10:00-10:45 International Perspectives & the Role of Organized Crime in Trafficking
Wiesje Zikkenheiner, Associate Expert
United Nations Office on Drugs & Crime, Pretoria
10:45-11:45 Identifying and Assisting Victims of Trafficking
Marija Nikolovska, Project Officer
International Organization for Migration, Pretoria

11:45-12:30 LUNCH

12:30-1:15 Prosecuting Trafficking Without Trafficking Laws
Adv. Nolwandle Qaba, Sexual Offences & Community Affairs Unit
National Prosecuting Authority, Pretoria
1:15-2:15 Recommendations for New Legislation in South Africa
Lowesa Stuurman - South African Law Reform Commission, Pretoria

2:15-2:30 TEA

2:30-2:50 The Role of Terre Des Homes in Fighting Trafficking in Children
Judith Mthombeni– Terre Des Homes, Pretoria
2:50-3:50 Trafficking in Children in South Africa – A Front Line Perspective
Patrick Solomon - Molo Songololo, Cape Town
3:50-4:00 Closing Remarks
Adv. Beatri Kruger
Department of Criminal & Medical Law - UFS

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