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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

Enhancement of social justice focus at research colloquium

2010-10-07

At the third Education for Social Justice Research Colloquium the publication Praxis towards sustainable empowering learning environments in South were handed to Prof. Ezekiel Moraka, Vice-Rector: External Relations at the UFS. At this occasion were, from the left: Prof. Dennis Francis, Dean of the UFS Faculty of Education; Prof. Sechaba Mahlomaholo, Research Professor in the Faculty of Education Sciences at the North-West University; Prof. Moraka; and Dr Milton Nkoane, Senior Lecturer in the UFS Faculty of Education.
Photo: Leonie Bolleurs

This year, the University of the Free State (UFS) was the host for the Research Colloquium: Education for Social Justice for the very first time. It is the third time that this colloquium has been presented.

Prof. Ezekiel Moraka, Vice-Rector: External Relations at the UFS, opened the colloquium, stating that academics, through their research, are ultimately in a good standing to advise government on important issues such as social justice for them to address these issues accordingly.

Prof. Sechaba Mahlomaholo, Research Professor in the Faculty of Education Sciences at the North-West University, delivered the opening address on the theme: Validating community cultural wealth towards sustainable empowering learning environments for social justice. He said that the legacy of our recent past as South Africa still continues to haunt us, especially as exemplified in the dysfunctionalities that are rife in our education.

“With the colloquium we manage to bring together the ideas, thoughts, resources and efforts of educators and/or educationists concerned with the creation of a more equitable, equal, free, hopeful, peaceful and socially just society. Through our teaching, our community engagement and research activities we strive towards a more humane, caring, respecting and respectful South Africa and the world,” he said.

According to Prof. Mahlomaholo, education and its research are some of the most potent mechanisms at the very centre of social transformation. The papers at the colloquium focused on investigating, understanding and responding to issues of amongst others:

The medium of teaching and learning which continues to be a barrier to many learners to perform to the best of their abilities in the majority of the education institutions in South Africa;
Health, sexuality, HIV/Aids, stigmatisation and other deseases plaguing our communities currently;
Self-fulfilling prophecies and stereotypes about some learners not being as intelligent as the rest and this finally being reflected and confirmed in their poor academic achievements;
Differentiated levels of parental involvement in the activities of their children’s learning due to long absences from their families as they have to work in far-off places of employment;

Papers delivered at the colloquium moved beyond merely identifying the problems; they also suggested possible and plausible research-based solutions to these, such as integrating HIV/Aids education in curricula, listening to the aspirations of significant stakeholders such as mothers and parents generally in teaching and facilitating more rigorous community engagement practices.

At the colloquium gala dinner the book Praxis towards sustainable empowering learning environments in South Africa by authors Dr Milton Nkoane, Senior Lecturer in the UFS Faculty of Education, Prof. Mahlomaholo and Prof. Dennis Francis, Dean of the Faculty of Education at the UFS, was launched. The publication consists of a collection of the best peer-reviewed papers from a conference with the theme Creating sustainable empowering learning environments through scholarship of engagement. The main criterion for inclusion was that the paper should contribute to the theme by means of an original, tight, theoretical and empirical study conducted with the aim of informing the practice of creating sustainable empowering learning environments. The concrete cases examined in many of the chapters are very useful to helping readers understand the specific, on-the-ground concerns related to higher education and schools.

Media Release
Issued by: Leonie Bolleurs
Strategic Communication
Tel: 051 401 2707
Sel: 0836455853
Email: bolleursl@ufs.ac.za
30 September 2010

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