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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

Dr Khotso Mokhele joins ranks of distinguished Chancellors

2010-11-21

Attending the inauguration ceremony are, from the left: Mr Pule Makgoe, MEC for Education in the Free State and member of the UFS Council; Judge Ian van der Merwe, Chairperson of the UFS Council; Dr Khotso Mokhele, newly inaugurated Chancellor of the UFS; and Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS.
Photo: Dries Myburgh

Dr Khotso Mokhele joined the ranks of distinguished Chancellors of the University of the Free State (UFS) with his inauguration as the new Chancellor of the institution at a ceremony on Friday, 19 November 2010.

The lustrous ceremony took place on the Main Campus in Bloemfontein and was attended by hundreds of guests from all over South Africa.

Dr Mokhele said in his speech: “I am excited to have been invited by the UFS to join its community at the time when it is attempting to reinvent itself into an institution that will be counted amongst those that will shape the local, regional, national will, and by so doing, contribute to the shaping of an African will.”

Dr Mokhele follows in the footsteps of Dr Franklin Sonn, former Ambassador of South Africa in the United States of America and receiver of many awards, acknowledgements, and honorary doctorates, who retired earlier this year. Dr Sonn was preceded by Ms Winkie Direko, former premier of the Free State.

His acceptance of the role of Chancellor is a great honour for the UFS.

According to Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS, it is a proud moment to welcome someone from the Province as the Chancellor of this university. With his strong academic values and deep sense of human compassion, Dr Mokhele is one of but a few uncompromising leaders. He is also an inspiring, determined pioneer and a role model to all our students.

Few have done as much to guide the development of science in South Africa since democracy in 1994 as Dr Mokhele. His vision and actions as a senior science manager have been guided by his deep conviction that for a truly democratic society to emerge in South Africa all people must be empowered to be its architects and must have unhindered access to those careers upon which our economy is built.

Dr Khotso Mokhele was born and raised in Bloemfontein. After matriculating from the Moroka High School he went on to study at Fort Hare, where he graduated with a B.Sc. in Agriculture, winning the Massey-Ferguson award for the best student in that field. As a recipient of the prestigious Fulbright-Hays Scholarship, he entered the University of California in Davis where he took a M.Sc. and a Ph.D. degree, both in Microbiology. He was awarded post-doctoral fellowships at the Johns Hopkins University School of Medicine in Baltimore, Maryland, and at the University of Pennsylvania, Philadelphia.

Dr Mokhele returned to South Africa in 1987, set on becoming a top-class academic and researcher. He held lecturing posts at the Universities of Fort Hare (1987-1989) and Cape Town (1990-1992). In 1992 he joined the Foundation for Research Development (FRD) as one of its Vice-Presidents. He succeeded to its presidency in 1996 and then from 1999 to 2006 became the first President of the National Research Foundation (NRF). He successfully merged the FRD and the Centre for Science Development of the Human Sciences Research Council. Under his visionary leadership the NRF has come to play a pivotal role in the development agenda of the country. He was also instrumental in the establishment of the South African Academy of Sciences serving as its founder president (1996-1998).

Dr Khotso Mokhele's contribution to science in South Africa has received wide recognition locally and abroad. He has received nine honorary doctorates. He was made a Chevalier of the Legion of Honour by the President of France in recognition of his personal efforts in strengthening scientific ties between France and South Africa, and was appointed a director of the Salzburg Seminar, an institution focused on global change, and subsequently a member of its Council of Senior Fellows.

He also serves on the boards of major companies such as Implats, Adcock Ingram and Afrox.

Complete speech (Pdf)

Media Release
Issued by: Lacea Loader
Director: Strategic Communication (actg)
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: loaderl@ufs.ac.za19 November 2010

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