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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 and Mexico forge links

2006-03-30

Some of the guests attending the signing of the memorandum of agreement were in front from the left Prof Wijnand Swart (Chairperson: Centre for Plant Health Management at the UFS), His Excellency Mauricio de Maria y Campos (Ambassador of Mexico in Southern Africa), Prof Magda Fourie (Vice-Rector: Academic Planning at the UFS) and Dr José Sergio Barrales Domínguez (Rector of the University of Chapingo in Mexico).
Photo: Stephen Collett

UFS and Mexico forge links
The Centre for Plant Health Management (CePHMa) in the Department of Plant Sciences at the University of the Free State (UFS) is presenting its first international conference. The conference started yesterday and will run until tomorrow (Friday 31 March 2006) on the Main Campus in Bloemfontein.

The conference is the first on cactus pear (or prickly pear) in South Africa since 1995. It coincides with 2006 being declared as International Year of Deserts and Desertification by the United Nations General Assembly.

During the opening session of the conference yesterday a memorandum of understanding (MOU) was signed between CePHMa and the University of Chapingo (Universidad Autonoma Chapingo) in Mexico. The signing ceremony was attended by the Ambassador of Mexico in Southern Africa, His Excellency Mauricio de Maria y Campos, the Rector of the University of Chapingo, Dr José Sergio Barrales Domínguez, and the Vice-Rector: Academic Planning of the UFS, Prof Magda Fourie, amongst other important dignitaries.

“South Africa and Mexico have a lot in common where agricultural practices in semi-arid areas and the role of the cactus pear are concerned,” said Prof Wijnand Swart, Chairperson of CePHMa at the opening of the conference.

He said that the MOU is the result of negotiations between CePHMa and the Ambassador of Mexico in Southern Africa over the past 12 months.

“The MOU facilitates the negotiation of international cooperative academic initiatives between the two institutions. This entails the exchange of students and staff members of the UFS, curriculum development, research and community service,” said Prof Swart.

“During the next two days, various areas of interest will be discussed. This includes perspectives from commercial cactus pear farmers in South Africa, the health management of cactus pear orchards, selection of new cultivars of cactus pear, and the nutritional and medicinal value of the crop,” said Prof Swart.

In his welcoming message Prof Swart explained that in recent years there has been increased interest in the cactus pear for the important role it can play in sustainable agricultural systems in marginal areas of the world. These plants have developed phenological and physiological adaptations to sustain their development in adverse environments.

“The cactus pear can serve as a life saving crop to both humans and animals living in marginal regions by providing a highly digestible source of energy, water, minerals and protein,” said Prof Swart.

“In an age when global warming and its negative impact on earth’s climate has become an everyday subject of discussion, the exploitation of salt and drought tolerant crops will undoubtedly have many socio-economic benefits to communities inhabiting semi-arid regions,” said Prof Swart.

“Plantations of cactus pear grown for fruit, forage and vegetable production, as well as for natural red dye produced from the cactus scale insect known as cochineal have, over the last two decades, been established in many countries in South America, Europe, Asia and Africa. The crop and its products have not only become important in international markets, but also in local markets across the globe,” said Prof Swart.

Detailed discussions on the implementation of the MOU will take place between CePHMa and the University of Chapingo after the conference.

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

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