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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

Access meets quality in UFS-Varsity College partnership for law degree

2012-07-30

At the event were, from the left: Mr Frank Thompson, CEO of ADvTECH, Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS, and Prof. Johan Henning, Dean of the Faculty of Law at the UFS.
Photo: Johan Roux
30 July 2012

The University of the Free State (UFS) and Varsity College this week officially launched a partnership whereby the university’s Faculty of Law will offer a four-year Bachelor of Law qualification through the UFS School of Open Learning on eight Varsity College campuses nationwide. This new degree will be offered as early as 2013.

This is the fulfilment of a dream, said Prof. Johan Henning, Dean of the Faculty of Law at the university. He was one of the speakers at the event that was attended by staff members and management from the, Faculty of Law, the university’s South Campus, Varsity College and ADvTECH.

The UFS Faculty of Law is one of the oldest and most distinguished faculties of law in South Africa, and has a close association with several overseas universities which ensures that the institution is internationally recognised.

“I am very positive and enthusiastic about this new partnership. We want to make this an enriching experience for staff and students from both the university as well as Varsity College,” Prof. Henning said.

The CEO of ADvTECH, Mr Frank Thompson, said he is overjoyed about the project and its potential. Varsity College is a brand of the ADvTECH Group, a JSE listed company invested in human capital.

“This is a new beginning for Varsity College and the UFS. Learning together, the slogan for this project, is very appropriate. We are excited to add new students to the university and Varsity College’s line-up,” Mr Thompson said.

Varsity College is part of the Independent Institute of Education (IIE), the leading provider of private higher education in South Africa. According to Dr Felicity Coughlan, Director of the IIE, the partnership between the IIE and the university is an example of the potential that is inherent in public-private partnerships to increase the range of high quality options available to students.

Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS, who also was one of the speakers at this event, said with this partnership, students will get the best of both worlds in accessing higher education.

The Faculty of Law will ensure that students obtain both a thorough grounding in legal theory, as well as a solid practical foundation, and Varsity College, through a strong commitment to innovative teaching and learning, will empower more students to become legal graduates of the highest calibre. Thus, the innovative partnership between the UFS and Varsity College will produce a Bachelor of Law degree that is highly sought after in the legal profession.

This partnership is the first of its kind, paving the way for increased collaboration between public and private tertiary institutions to best serve the education sector and the future of graduates.

“This is what is possible when two dynamic partners like the university and Varsity College come together,” Prof. Jansen said.

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