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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 awards honorary doctorate to Archbishop Emeritus Desmond Tutu

2011-01-01

Archbishop Emeritus Desmond Tutu

The University of the Free State (UFS) will reach a milestone in its history today when an honorary degree, the Doctor of Theology, will be conferred on Archbishop Emeritus Desmond Tutu.

At the same event Archbishop Tutu will launch the university’s International Institute for Studies in Race, Reconciliation and Social Justice.

The idea of the establishment of such an institute originated after the Reitz incident in 2008. In 2009, during his official inauguration, Prof. Jonathan Jansen, Vice-Chancellor and Rector, embodied this idea when he stated that the university would be an example of a place where reconciliation, forgiveness and social justice would not only be studied, but where it would also be applied in practice. “Students and scholars from across the world will come to the UFS to study the theory and practice about the building of societies across the boundaries of race, as well as religion, gender, disabilities and national origin,” Prof. Jansen said.

“The institute is a critical intellectual space where engaged scholarship, public discussion, community engagement and contextually relevant teaching are innovatively harnessed towards exploring and finding solutions to the complex and challenging work of social transformation in South Africa,” says Mr John Samuel, Interim Director of the institute. Mr Samuel was the former Chief Executive Officer of the Nelson Mandela Foundation.

According to Mr Samuel, the institute seeks to establish itself as a premier international site for research on race, reconciliation and social justice. “We want to link the manifestations of race in higher education, to the related matters of reconciliation and social justice in the South African context against the backdrop of racial and ethnic conflicts elsewhere in the world,” says Mr Samuel.

The institute will, amongst others, publish groundbreaking research, organise national and international conferences about reconciliation and social justice, as well as contribute to the establishment of national and international networks that are actively involved in matters relating to race, reconciliation and social justice. Through its research, the institute will endeavour to understand the challenges facing the UFS better, as well as how to address these challenges. For this reason, the concept of the UFS as a “live laboratory” and the use of evidence-based practice remain important for the university.

By honouring Dr Tutu, the UFS recognises the contribution that Dr Tutu has made in the field of Theology through his teachings and the books he has written. However, the UFS is not only honouring him as a moral and religious leader who has maintained his integrity as a Christian. “We honour a great son of South Africa who has made a huge contribution to peace, reconciliation and justice in South Africa and in the world,” says Prof. Jansen.

The unveiling of the new corporative brand of the UFS will render further lustre to the day.

Media Release
17 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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