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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

UFS student government elections declared free and fair

2015-09-04

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Video: SRC announced (Bloemfontein Campus)

The 2015/2016 Student Representative Council (SRC) elections on the Bloemfontein and Qwaqwa Campuses of the University of the Free State (UFS) have been declared free and fair.

The institutional Independent Election Commission Chairperson, Mandla Ndlangamandla, commended the high level of cooperation displayed by all students who participated in the peaceful and organised elections on the Qwaqwa Campus.

“We are proud to indicate that from the beginning of the election process, there were no incidents of intimidation, disruption, threats, and violence that were reported,” he said.

Announcing the election results at Bloemfontein Campus, the representative of the Electoral Commission of South Africa (IEC), Andrew Ndelele, also confirmed that the commission had ensured that the elections were credible.

Voter turn-out increased at both campuses compared to the previous year. The elections, which took place from Friday 28 August to 1 September 2015, saw 8% and 0.7% increases in votes casted at the Qwaqwa and Bloemfontein Campuses, respectively.

Paseka Sikhosana, President-elect of the Qwaqwa Campus, commended the unity and orderliness displayed by students: “After the polling stations had closed, we came together and sang in peace”.

Incoming SRC President of the Bloemfontein Campus, Lindokuhle Ntuli, also endorsed the impartiality of the elections, while expressing how humbled he was by the support he received during the campaigning period.

Bloemfontein elective portfolios:

Bloemfontein Campus president: Lindokuhle Ntuli
Photo: Johan Roux

President: Lindokuhle Ntuli
Vice-President: Mpho Khati
Secretary: Tsietso Mafaso
Treasurer: Katleho Masheane
Culture: Delia Moumakwe
Sport: Kabelo Elijah Noosi
Transformation: Katleho Mmolayeng Letube
Student Accessibility and Support: Victor Fana Sejane
Media and Marketing: Peo Morwesi Segano
First-generation students: Nicola King
Legal and Constitutional Affairs: Luke Harrold Small
Student Development and Environment: Karabo Pheko

Bloemfontein ex officio portfolios:

Associations Student Council: Sikhulekile Luwaca
Academic Affairs Student Council: Letsika Liqoalane
Campus Residences Student Council: Ingrid Wentzel
Commuter Student Council: Audrey Sithebe
Postgraduate Student Council: Kamogelo Dithebe
International Student Council: Takudzwa Gezi
Student Media Council: Hatsu Mphatsoe
Rag Fundraising Council: Tubatsi Moloi
Rag Community Service Council: Johan Diedericks

Qwaqwa Campus president: Paseka Sikhosane
Photo: Thabo Kessah

Qwaqwa elective portfolios:

President: Paseka Sikhosane
Vice-President: Zethu Mhlongo
Secretary: Nondumiso Langa
Treasurer: Palesa Selepe
Student Development and Environmental Affairs: Lindokuhle Ngubane
Media and Publicity: Bongiwe Buthelezi
Politics and Transformation: Nthabiseng Mokoena

Qwaqwa ex officio portfolios:

Academic Affairs: Edward Nkadimeng
Arts and Culture: Kwenzakwenkosi Mthethwa
Sports Affairs: Thabo Zengele
Rag and Dialogue: Dieketseng Mokoena
Religious Affairs: Mamosebetsi Mokoena
Residence Affairs: Pheletso Moekoa
Off-Campus: Nicholas Sibeko

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