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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

New SRC: Records of support and a victory for women

2014-09-04

Ms Mosa Leteane and Ms Louzanne Coetzee
Photo: Johan Roux

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While campuses across South Africa regularly report falling voter turnout in campus elections of student representatives, the University of the Free State, in its recently completed SRC elections, registered record levels of support across our campuses with a total voter turnout of 44%. At the Bloemfontein Campus 34,4% of students voted (5052 votes) and 53,3% (1583 votes) at the Qwaqwa Campus.

Also, for the first time under the new SRC constitution, students elected a woman to lead the student body – Ms Mosa Leteane was elected as President. Another first was the election of a blind woman to the SRC – Ms Louzanne Coetzee. She will be responsible for student accessibility of our Bloemfontein SRC. This marks a victory for women in student governance.

Mr Tulasizwe Sithole was elected as the President of the SRC at our Qwaqwa Campus.

The election of Ms Leteane as President underscores the progress achieved for gender equality with near half of her SRC consisting of women (48%).

These successes are all the more significant, since this is the 4th year of elections under newly adopted SRC constitutions that allow for broader participation of diverse student constituencies in student governance.

This means that the crucial 3-year mark to test a new approach and method in governance and elections was not only successfully reached, but also in its 4th year shows the constitution as one that sustains its impact to deepen democracy and citizenship among our 30,000-strong student body.

“The results of the SRC elections across campuses show that our students are not only ready to lead our campus communities on issues relating to justice, freedom and democracy beyond our societal legacies of race and gender, but do so also for the student movement nationally. We’re immensely proud of our students, who show courage and resilience to choose leaders not for expediency, but for significance, and to lead not for some, but for all”, the Dean of Student Affairs, Rudi Buys, said.

The Qwaqwa SRC was installed on 2 September 2014, while the Bloemfontein SRC will be installed on 5 September. The Central SRC will be established on 14 September by joint sitting of the two SRCs.

The SRC members 2014/15 at the Bloemfontein and Qwaqwa Campuses are as follows:

Bloemfontein Elective portfolios:
President: Ms Mosa Leteane
Vice Pres: Mr Waldo Staude
Secretary: Ms Dineo Motaung
Treasurer: Ms Maphenye Maditsi
Arts & Culture: Mr Stefan van der Westhuizen
Accessibility & Student Support: Ms Louzanne Coetzee
First Generation Students: Ms Mpho Khati
Media, Marketing & Liaison: Ms Lethabo Maebana
Legal & Constitutional Affairs: Mr Lindokuhle Ntuli
Sport: Ms Dominique de Gouveia
Student development & Environmental Affairs: Mr Victor Ngubeni
Transformation: Mr Tumelo Rapitsi

Bloemfontein Ex officio Portfolios
Dialogue & Ex officio: Associations Student Council: Mr Piet Thibane
Academic Affairs & Ex officio: Academic Affairs Student Council: Mr Jonathan Ruwanika
Residence Affairs & Ex officio: Campus Residences Student Council: Ms Melissa Taljaard
City student Affairs & Ex officio: Commuter Student Council: Ms Kerry-Beth Berry
Post graduate Affairs & Ex officio: Post Graduate Student Council: Ms Masabata Mokgesi
International Affairs & Ex officio: International Student Council: Mr Makate Maieane
Student Media Affairs & Ex officio: Student Media Council: Mr Samuel Phuti
RAG Community Service & Ex officio: RAG Fundraising Council: Mr Johan du Plessis
RAG Community Service & Ex officio: RAG Community Service Council: Mr Manfred Titus

Qwaqwa Elective portfolios:
President General: Mr Thulasizwe Sithole
Deputy President: Ms Zethu Mhlongo
Secretary General: Mr Vukani Ntuli
Treasurer General: Mr Langelihle Mbense
Media & Publicity: Ms Nongcebo Qwabe
Politics & Transformation: Ms Nkosiphile Zwane

Qwaqwa Ex officio Portfolios
Student Development & Environmental Affairs: Mr Ndumiso Memela
Academic Affairs: Mr Simon Mofekeng
Arts & Cultural Affairs: Ms Samkelo Mtshali
Off-Campus Students: Mr Khanyisani Mbatha
RAG, Community Service & Dialogue: Mr Njabulo Mabaso
Religious Affairs: Mr Mfundo Nxumalo
Residence & Catering Affairs: Ms Ntombifuthi Radebe
Sports Council: Mr Luvuno

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