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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

Guest lecture: Mr Pretorius, CEO of McCarthy Limited

2004-11-05

The challenges facing business leaders in a rapidly changing South Africa

“The world we used to know does not exist anymore. Leaders are continually dealing with crisis and opportunities, in a high-pressure environment,” said Mr Brand Pretorius, honorary professor from the University of the Free State , delivering his 13th guest lecture on the challenges facing business leaders in a rapidly changing South Africa .

Mr Pretorius, CEO of McCarthy Limited, identified certain trends which are responsible for changes to the South African business environment. He said the South African business environment is ever-changing, fast moving, complex and unpredictable. “As business people we have to deal with the impact,” he said.

“Years ago we were globally isolated. Now we live in a shrinking borderless world with crumbling trade barriers. Globilisation of our economy is accelerating. For South African business leaders this creates a sea of export opportunities,” he said.

Although there are ongoing demands for substantial profit growth from shareholders, the days of focussing only on their interests are gone, said Mr Pretorius. Stakeholder commitment now enjoys high priority and business leaders have to deal with the challenges accompanying black economic empowerment and employment equity.

Customers are also well-informed and demanding. Business leaders could easily loose the loyalty of their customers because of a hyper-competitive environment with an oversupply of goods and services.

Mr Pretorius stated that staff want to be involved and are looking for meaning in their workplace. Employers also have to deal with HIV/Aids in their workplaces. Trauma, absenteeism and financial implications could have a great effect on the viability of a business.

Against these changes Mr Pretorius pointed out the challenges business leaders are facing. In doing so a number of questions arise. The external business climate is characterised by turbulence and change. Internally there is a need for stability and meaning. How do we handle both challenges effectively?

Because of changes strategy decay is taking place and past strategies become irrelevant. Mr Pretorius said that business leaders need to modify their business models to prevent the downfall of their companies.

It is important for leaders to know what is happening in their world. “Continuous innovation is a critical success factor. The reality is that innovation is the only insurance against irrelevance,” he said.

Because of a changed environment leaders must perform and transform, simultaneously. How do we strike a balance between focused transformation and the achievement of world class performance, asked Mr Pretorius? “We need to bring about meaningful and sustainable empowerment, in order to create an inclusive economy and society. Leadership and management profiles should reflect the diversity of our teams, however at the same time every effort should be made to stop the brain drain and retain the expertise of experienced white managers.”

He also stated that leaders have an important role to play in terms of employment creation and corporate caring. “Sustainable stability and prosperity will not materialise without efforts in this regard.”

Mr Pretorius said that above challenges could be addressed by developing the ability to focus on creating a better future, rather than defending the past, a long-term vision, facing new realities, enhancing the value of brands and mobilising IT and the Internet to serve the business and customers better.

Retaining a positive vision of the future, embracing change and transformation, building your business according to the right principles and values and aspiring to be the best are some of the guidelines, according to Mr Brand, for future business success. He stated that creating a value advantage above one’s competitors, customer satisfaction and retention and inspirational leadership will add to the success of one’s business.

“We are indeed living in the era of the ultimate challenges, but also the ultimate opportunities. Let me clearly state that I have hope – in my view the tide has turned. Every day I experience small miracles inspired by ordinary people making an extraordinary difference,” said Mr Pretorius.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
5 November 2004

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