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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

A brand-new image for historic University of the Free State

2011-01-19

Prof. Jonathan Jansen, Vice-Chancellor and Rector, and Prof. Teuns Verschoor, Vice-Rector of Institutional Affairs, during the media conference to launch the new brand.
- Photo: Hannes Pieterse

A new chapter was written in the history of the University of the Free State (UFS) on Thursday, 27 January 2011 when it launched its revitalised brand image.

The brand evolution has resulted in the adoption of two primary brands to engage with its stakeholders – an evolved academic crest and a new marketing brand for the institution’s offerings and services.

The university, which recently won the World Universities’ Forum award for academic excellence and institutional transformation, was founded in 1904 as a dynamic learning environment where academic excellence and the development of leadership qualities are long-standing traditions. These values are the backbone of the university and the foundation of the new brand as it seeks to adapt to the changing needs of society, without sacrificing its rich history and heritage.

The process of revitalising and creating a renewed image of the UFS, spearheaded by the university’s inspirational leader, Prof. Jonathan Jansen, started in February 2010 and involved a comprehensive and consultative process to understand the deep insights that underpin the fabric of the institution among its key stakeholders.

“We engaged in one of the most expansive and intensive process of consultations with staff, alumni, senate, council and other stakeholders to determine how and in what ways our brand could signal a more inclusive and forward-looking vision that captured the spirit and essence of the new country and a transforming university,” says Prof. Jansen.

The new brand is anchored in the university’s renewed motto “In Veritate Sapientiae Lux” (In Truth is the Light of Wisdom), which has been evolved to embrace the diversity of the community the university without losing its essence. As Judge Ian van der Merwe, Chairperson of the UFS Councilnoted, “the motto retains concepts with which not only Christians can identify, but which also accommodate all the different viewpoints of the UFS’s diverse students and staff. Hereby a feeling of unity and belonging is promoted.”

The new brand identity was developed by the country’s foremost academic branding authority, the Brand Leadership Group. “We worked with the university to develop a brand that reflects an inclusive, forward-thinking truly South African university in tune with its changing environment which embraces its past, present and signals the future,” says Thebe Ikalafeng, founder of Brand Leadership Group.

The new brand has found resonance with the various university stakeholders. “The end product is excellent,” commented Mr Naudé de Klerk, Chairperson of Kovsie Alumni. “It represents a history of hope, excellence, innovation and transformation. Above all, it represents a leap of faith, which extends from a humble beginning in 1904 to the strong and vital academic institution it is today.”

Finally, where it matters, the new brand also gets the students’ vote. “Our new brand illustrates and communicates to the rest of the world the message that we as the University of the Free State refuse to be tied down to the failures of the past, but instead confidently sprint forward to the successes of tomorrow,” says Modieyi Motholo, Chairperson of the university’s Interim Student Committee.

Messages

Media Release
27 January 2011
Issued by: Lacea Loader
Director: Strategic Communication (actg)
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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