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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

New challenges for animal science discussed

2006-04-04

Some of the guests attending the congress were from the left Dr Heinz Meissner (honorary president of the South African Society for Animal Science (SASAS) and senior manager at the Animal Production Institute of the Agricultural Research Council), Mr Paul Bevan (President of SASAS) and Prof Magda Fourie (Vice-Rector: Academic Planning at the UFS).
Photo: Lacea Loader

New challenges for animal science discussed

The South African Society for Animal Science (SASAS) is presenting its 41st Congress at the University of the Free State’s (UFS) Main Campus in Bloemfontein.

The congress started yesterday and will run until Thursday 6 April 2006. The theme is New challenges for the animal science industries.

It is one of the largest congresses in the 45 years since SASAS was founded in 1961. Among the delegates 12 African countries are represented, with the biggest delegation from Kenya. Delegates are also from the United States of America, Iran, Turkey, Germany, the Netherlands and Portugal and African countries like Zimbabwe, Mozambique and Botswana.

“Many of our members play an important role in the training of animal scientists at universities. The congress is specifically industry orientated so that scientists can interact with farmers through the respective producer organisations,” said Prof HO de Waal, Chairperson of the organising committee and lecturer at the UFS Department of Animal, Wildlife and Grassland Sciences.

According to Dr Heinz Meissner, honorary president of SASAS and a senior manager at the Animal Production Institute of the Agricultural Research Council, the National Livestock Strategy (NLS) Plan clarifies the role and responsibility of the livestock sector.

“Through this strategy we need to focus on enhancing equitable access and participation in livestock agriculture, improve global competitiveness and profitability of the livestock sector and ensure that the ventures implemented do not over utilise our resources,” said Dr Meissner.

In her welcoming address, Prof Magda Fourie, Vice-Rector: Academic Planning at the UFS highlighted the related challenges that the UFS will be focusing on specifically over the next five years. “We have identified five strategic clusters that represent broad areas of excellence in research and post-graduate education. Two of these are food production, quality and safety for Africa and sustainable development,” she said.

“The food safety and security cluster will focus on the production of food in all its varieties within the African context, encompassing the entire value chain – from production to consumption and nutrition related issues. This would include a strong emphasis on sustainable production systems,” she said.

According to Prof Fourie the rural development cluster will engage in questions around the role of higher education in sustainable development. “One of the focus areas in this strategic cluster pertains to sustainable livelihoods. It refers to a way of approaching development that incorporates all aspects of human livelihoods and means by which people obtain them,” she said.

Prof Fourie said that the challenges we are facing such as food production can only be effectively addressed through collaborative efforts. “That is why it is important that collaboration takes place between different scientific disciplines, researchers, institutions and countries who are confronted with similar difficulties,” she said.

According to Prof de Waal the congress will give key role players a unique opportunity to present a profile of what they perceive an animal scientist should be and state their specific requirement regarding the animal sciences and its applications.

“In this way we can determine what the industry’s needs are and we can re-align our curriculum to suit these needs,” said Prof de Waal.

During the next two days, various areas of interest will be discussed. This includes ruminant and monogastric nutrition, animal physiology, beef, dairy, sheep and ostrich breeding and sustainable farming covering the range from commercial to the small-scale farming level.

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

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