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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

JN Boshoff Memorial Lecture: Dr Charles Nwaila

2005-09-13

Dr Charles Nwaila, Director-General of the Free State Provincial Government and Vice-Chairperson of the University of the Free State's (UFS) Council, recently discussed the repositioning of the Free State Provincial Government to respond to the 21st century demands during the JN Boshoff Memorial Lecture at the UFS.

From left: Dr Nwaila; Prof Tienie Crous, Dean: Faculty of Economic and Management Sciences; Prof Frederick Fourie, Rector and Vice-Chancellor and Dr Moses Sindane, Departmental Chairperson: Department of Public Management at the UFS.

A summary of the lecture.

Free State government to focus on training of public servants

The Free State provincial government in collaboration with higher education institutions in the province is to establish the Free State Association of Public Administration to get public servants to work effectively towards the growth and development of the province.
This was announced by the Director-General of the Free State provincial government, Dr Charles Nwaila, during a lecture he delivered at the University of the Free State (UFS) in Bloemfontein this evening (Thursday 8 September 2005).

Delivering the annual JN Boshoff Memorial Lecture at the UFS, Dr Nwaila called on higher education institutions to play a critical and leading role in the re-engineering of the existing Provincial Training and Development Institute housed at the Vista campus of the University of the Free State in Bloemfontein.

Dr Nwaila was formerly the Superintendent-General (head) of the Free State Department of Education and currently serves as the Deputy Chairperson of the Council of the University of the Free State.
He said the proposed Free State Association of Public Administration is a joint initiative with the National Academy of Public Administration based in Washington DC.

“We take this opportunity to invite the University of the Free State and other knowledge based institutions to join the Provincial Government in fostering a collaborative network to help us develop our public servants,” Dr Nwaila said.
He said there were accelerating demands and a lot of pressure on limited resources, with Free Staters expecting more from their government than ever before.

“Civil servants in a developmental state are servants of the people, champions of the poor and the downtrodden and not self-serving individuals that seek only advancement on the career ladder,” Dr Nwaila said.
According to Dr Nwaila, the Free State Growth and Development Strategy has identified 11 areas that need to be addressed by the year 2014, including:

• To reduce unemployment from 38% to 20%
• To improve the functional literacy rate from 69,2% to 85%
• To stabilize the prevalence rate of HIV and AIDS and reverse the spread of the disease
• To provide a free basic service to all households
• To provide adequate infrastructure for economic growth and development

Dr Nwaila said that the Free State government will continue to follow a people-centred approach towards these development objectives with a keen sense of unity and unwavering determination to create the best of times for the Free State and all its people.

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