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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

Publication on indigenous knowledge systems

2005-10-21

Dr Otsile Ntsoane (acting Director: IKS, Department of Science and Technology) and Prof Philip Nel (Director: Africa Studies at the UFS and guest editor of the publication) at the launch of the publication

UFS launches most comprehensive publication on indigenous knowledge systems
A unique collection of essays on Indigenous Knowledge Systems (IKS) was launched yesterday (20 October 2005) by the University of the Free State’s (UFS) Programme of Africa Studies.

The essays are published as a special edition of INDILINGA, the African Journal for Indigenous Knowledge Systems and is an outcome of the colloquium on Indigenous Knowledge Systems that was presented last year by the UFS Director of Africa Studies in cooperation with the National Research Council.

“The amount and diversity of materials on IKS brought together under one cover is unique as there are no other South African publications of this magnitude on this issue. It contains papers of international experts on IKS such as Prof Fritz Wallner from Austria and Prof Gayatri Spivak, foremost postcolonial theorist from India,” said Prof Philip Nel, Director of Africa Studies and guest editor of the publication.

“The publication is a rich source field for students and scholars to exploit because most of the sources quoted in the articles are recent, fresh and relevant. The contributors are largely people responsible for managing, fostering and studying IKS in a responsible manner,” said Prof Nel.

“An added value of the publication is the inclusion of the policy document on IKS that was adopted by Cabinet in November 2004,” said Prof Nel.

“Millions of people in South Africa are faced with the painful choice of abandoning their heritage. In this choice, the study and management of IKS has a major role to play; on the one hand, to encourage as much assimilation of traditional knowledge as possible into the modern systems, and on the other hand to provide a “language” and a “grammar” for indigenous people through which they can access modernity,” said Prof Nel.

The IKS debate involves questions of African identity, protection of indigenous communities and practices, political aspects as well as the scientific integrity of the enterprise.

The publication displays the range of burning questions that have to be resolved in this field such as mainstreaming IKS in academic debate and practice, recognition and protection of the knowledge holders, bio-prospecting and bio-piracy, bio and ethnic healing, lack of textbooks and field manuals, etc and will prove worthwhile for future researchers.

“One of the main reasons for publishing this volume is the fact that IKS should be studied not only to provide a sense of pride in the past, or to engender respect for indigenous peoples, but also to enable people in indigenous mind sets to make a better transition into the world of science and technology,” said Prof Nel.

The guest speaker at the launch was Dr Otsile Ntsoane, acting Director of IKS at the Department of Science and Technology. In his speech Dr Ntsoane stressed the symbolic and concrete value of the publication. “The publication can have a great social impact and the research results can contribute to chancing the economic landscape of South Africa,” he said.

The publication can be purchased at R150 per copy. For more information, Ms Steffi Cawood, Programme Coordinator for Africa Studies at the UFS can be contacted at (051) 401-2614.

Media release
Issued by:Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
21 October 2005

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