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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

Student leaders 2012/13 announced

2012-08-30

Ready for the task - Sabelo Khumalo, SRC President of the Qwaqwa Campus and William Clayton, SRC President of the Bloemfontein Campus.
Photo: Johan Roux
31 August 2012

The 2012/13 elections for the Student Representative Councils (SRC) of the University of the Free State were completed successfully and show meaningful support for the changes in student governance adopted by students across campuses over the past two years.

The SRC elections at the Qwaqwa Campus were completed on 23 August 2012, while the elections at our Bloemfontein Campus took place on 27 and 28 August 2012.

The SRC Elections at our Bloemfontein Campus showed a voter turnout of 4516 votes (30.8%), with the elections at the Qwaqwa Campuses showing 1753 votes (46%) – both campuses reached the required quorums and the IEA (Bloemfontein Campus) and IEC (Qwaqwa Campus) declared the elections free and fair and announced the results as a true reflection of the will of the student bodies at the campuses.

The full SRC at Bloemfontein Campus now consists of 62% black and 38% white, and 53% female and 47% male members.

In the Qwaqwa elections, SADESMO achieved 46, 38% of the vote, with SASCO, PASMA and NASMO each achieving 30,23% and 8,39% and 14,26%, respectively.

The successful elections at Bloemfontein Campus show that the detailed transformation of student governance introduced by students at the Campus in 2010 and adopted by the university in 2011, succeeded in mobilizing greater participation of students in governance and representation. These changes in the main included a shift to independent candidacy for elective portfolios (12 seats) and organizational candidacy in nine sub-councils that holds ex officio seats on the SRC. Changes also included the establishment of student representative seats in faculty governance and management forums and the adoption of a reviewed Central SRC Constitution. Ex officio seats hold full and equal constitutional authority in the SRC.

Students at Qwaqwa Campus introduced additional portfolios to its SRC, including ex-officio seats for academic affairs, arts and culture, commuter students, Rag Community Service, religious affairs, residences and sports.

A joint sitting of the Campus SRCs will establish the Central SRC 2012/13 on 9 September 2012.

As a further opportunity for participation in and the development of student governance and representation, the current Central SRC herewith also announces its recent adoption of a student governance advisory programme, namely the UFS Student Elders Council (SEC).

The SEC is established as a combined programme between the Central SRC and the Dean of Student Affairs and will consist of selected senior student leaders from all campuses who completed their terms of office, apply and are appointed to the Elders Council by the Central SRC.

The Council will serve as an advisory structure to the Central SRC and other student structures in support of the continuous development of student governance and representation of the student body at the university.

The SEC will advise the Central SRC to be constituted following the constitution of the respective Campus SRCs.

The SRC members at the Bloemfontein Campus are:

President: Mr William Clayton

Vice-President: Mr Bonolo Thebe

Secretary: Ms Karis-Robin Topkin

Treasurer: Mr Pieter Coetzee

Arts & Culture: Ms Chanmari Erasmus

Accessibility & Student Support: Ms Gene McCaskill

First-generation Students: Ms Tanya Calitz

Legal and Constitutional Affairs: Ms Nokuthula Sithole

Media, Marketing & Liaison: Ms Neo Chere

Sport: Mr Tshepo Moloi

Student Development & Environmental Affairs: Ms Thabisile Mgadi

Transformation: Ms Koketso Mofokeng

Dialogue & Ex officio: Associations Council: Mr Anesu Ruswa

Academic Affairs & Ex officio: Academic Affairs Council: Ms Nombuso Ndlovu

Residence Affairs & Ex officio: Residences Council: Mr Johann Steyn

City Residence Affairs & Ex officio: Commuter Council: Mr Michael van Niekerk

Postgraduate Affairs & Ex officio: Postgraduate Council: Mr Fadeyi Akinsuyi

International Affairs & Ex officio: International Council: Ms Tumelo Moreri

Student Media Affairs & Ex officio: Media Council: Mr Jamal-Dean Grootboom

RAG Community Service & Ex officio: RAG Fundraising Council: Mr Jaco Faul

RAG Community Service & Ex officio: RAG Community Service Council: Ms Keneue Mahloana

The SRC members at the Qwaqwa Campus are:

President General: Mr S Khumalo

Deputy President: Mr P T Lenka

Secretary General: Mr D Khethang

Treasurer General: Mr S I Sithole

Media & Publicity: Mr S N Ntombela

Politics & Transformation: Tbc

Student Development & Evironmental Affairs: Tbc Academic Affairs: Mr T Molawude

Arts & Cultural Affairs: Mr T Nkohli

Off-Campus Students: Mr B Mtshali

RAG, Community Service & Dialogue: Ms S F Mlotya

Religious Affairs: Ms D C Khau

Residence & Catering Affairs: Ms Z Mzolo

Sports Council: Mr S Mngomezulu

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