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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

Moshoeshoe Memorial Lecture to focus on Leadership challenges

2006-03-27

Lecture to focus on Leadership challenges

n Thursday 25 May 2006 – Africa Day – the University of the Free State (UFS) will host the inaugural King Moshoeshoe Memorial Lecture in honour of this great African leader and nation-builder.

Prof Njabulo Ndebele, internationally renowned writer and academic, and Vice-Chancellor of the University of Cape Town (UCT), will deliver the inaugural lecture at the Main Campus in Bloemfontein on the topic: Reflections on the Leadership Challenges in South Africa.

“I see the lecture as part of a larger debate on leadership models, particularly the concept of African leadership, as well as the ongoing discourse about nation-building and reconciliation,” says Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS.

According to Prof Fourie, the Moshoeshoe project was launched at the UFS in 2004 to coincide with South Africa’s first decade of democracy and was part of the University’s centenary celebrations, having been founded in 1904.

“Through this project the UFS seeks to honour a great African leader and demonstrate our commitment to transformation so as to create a truly inclusive and non-racial university,” said Prof Fourie.

“As the founder of the Basotho nation, King Moshoeshoe is widely credited for his exceptional style of leadership, displaying the characteristics of diplomacy, reconciliation and peaceful co-existence in his efforts to unite diverse groups into one nation,” said Prof Fourie.

As part of its ongoing Moshoeshoe project, the UFS commissioned a television documentary programme on the life and legacy of King Moshoeshoe. This was completed in 2004 and broadcast on SABC 2 later that year.

For further information, Me Tumi Tabane can be contacted at (051) 401-2828 or tabaneme.stg@mail.uovs.ac.za.

Abridged curriculum vitae of Njabulo S Ndebele

Professor Njabulo S Ndebele is currently Vice-Chancellor and Principal of UCT.

Njabulo Ndebele began his term of office at UCT in July 2000, following tenure as a scholar in residence at the Ford Foundation’s headquarters in New York. He joined the Foundation in September 1998, immediately after a five-year term of office as Vice-Chancellor and Principal of the University of the North in Sovenga, at the then Northern Province. Previously he served as Vice-Rector of the University of the Western Cape. Earlier positions include Chair of the Department of African Literature at the University of the Witwatersrand; and Pro-Vice-Chancellor, Dean, and Head of the English Department at the National University of Lesotho.

An established author, Njabulo Ndebele recently published a novel The Cry of Winnie Mandela to critical acclaim. An earlier publication Fools and Other Stories won the Noma Award, Africa’s highest literary award for the best book published in Africa in 1984. His highly influential essays on South African literature and culture were published in a collection Rediscovery of the Ordinary.

Njabulo Ndebele served as President of the Congress of South African Writers for many years. As a public figure he is known for his incisive insights in commentaries on a range of public issues in South Africa. He holds honorary doctorates from Universities in the Netherlands, Japan, South Africa and the United States of America. He is also a Fellow of UCT.

Njabulo Ndebele is also a key figure in South African higher education. He has served as Chair of the South African Universities Vice-Chancellor’s Association from 2002-2005, and served on the Executive Board of the Association of African Universities since 2001. He has done public service in South Africa in the areas of broadcasting policy, school curriculum in history, and more recently as chair of a government commission on the development and use of African languages as media of instruction in South African higher education. He recently became President of the Association of the AAU and Chair of the Southern African Regional Universities Association (SARUA).

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
26 March 2006

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