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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

Environmental management – the answer to a sustainable green economy

2014-11-03

From the left are: Tshepo Moremi (Deputy Director-General), Mamotena Puleni (Personal Assistant to the Deputy Director-General) and Prof Maitland Seaman (Head of Department: Centre for Environmental Management).

Photo: Ifa Tshishonge

As part of celebrating 20 years of existence, the Centre for Environmental Management at the University of the Free State (UFS) hosted a public lecture themed, ‘The Future of Environmental Management’. Mr Tshepo Moremi, Deputy Director-General of the Department of Environmental Affairs and Tourism (Free State), portfolio Environment, Conservation and Tourism, delivered this lecture.

Mr Moremi said, “The environmental performance of South Africa must be seen in the context of our history and the country’s transition. South Africa has taken the lead in being a responsible global citizen, and we also participate in international projects in this field.”

South Africa hosts one of the richest biodiversities in the world. However, the country’s economy is still very energy - and carbon intensive.

“According to the World Health Organisation, approximately 16% of all deaths and one-third of diseases in children under the age of five years are environmentally related. Inadequate sanitation and indoor pollution are key factors,” Mr Moremi said.

“Academic institutions like the UFS and the government need to take the role of equipping citizens with skills and training so that we can overcome the challenges and seize opportunities related to the environment.

“Financing mechanisms for projects related to environmental sustainability were introduced in 2011. However, we still lack skilled capacity to run these projects smoothly and to use international and national funding strategically.

“Looking forward and responding to our challenges, it is vital that we transform our economy to be an international competitor and job-creation hub, and to be sustainably climate resilient, as outlined by the National Development Plan. Minimum standards will also be put in place to regulate emissions and monitor air quality. The sustainability of society’s well-being is important to the long-term role of environmental management in boosting our socio-economic status as a nation,” Mr Moremi said.

He emphasised that it must not only be about conserving and preserving. “Our people should benefit economically and socially,” he said.

Mr Moremi encouraged the audience to defend ideas that protect our non-speaking natural resources. “Let’s all do what we can and rise to this advocacy challenge,” he added. He also expressed his gratitude towards the university for honouring him during such a celebration and for working together in advocating for environmental issues.

The Centre for Environmental Management also hosted a strategic colloquium, discussing issues such as demography, resources, climate, water, environmental management, academic pursuance, as well as curriculum and the role of professional registration which may have an influence on the nature of its programmes.

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