Latest News Archive

Please select Category, Year, and then Month to display items

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 in forefront with ASGI-SA initiative

2006-05-10

At the conceptualisation colloquium and stakeholder dialogue were from the left Dr Aldo Stroebel (senior researcher at the UFS Research Development Directorate), Dr Edith Vries (acting Chief Executive Officer of the Independent Development Trust) and Prof Frans Swanepoel (Director: UFS Research Development Directorate).

UFS in forefront with ASGI-SA initiative

Two staff members of the University of the Free State (UFS) have been appointed as members of the advisory board of the national programme for the creation of small enterprises and jobs in the second economy. This programme forms part of government’s Accelerated and Shared Growth Initiative of South Africa (ASGI-SA).

Prof Frans Swanepoel, Director of the UFS Research Development Directorate and Dr Aldo Stroebel, senior researcher at the UFS Research Development Directorate, are working with a team of experts from the UFS on a draft implementation strategy for the national programme. Both Prof Swanepoel and Dr Stroebel are also associated to the UFS Centre for Sustainable Agriculture.

“The strategy is being developed in collaboration with institutions like the Independent Development Trust, the Department of Agriculture, the National Development Agency and the Department of Trade and Industry,” says Prof Swanepoel.

The other team members of the UFS are Prof Basie Wessels, Director of the Mangaung-University Community Partnership Programme (MUCPP) and Mr Benedict Mokoena, project manager at the MUCPP.

Dr Stroebel was also member of the organising committee of a conceptualisation colloquium and stakeholder dialogue that was recently presented in Johannesburg. The conference was attended by more than 400 delegates from government departments, higher-education institutions and civil society, including Dr Kobus Laubscher, member of the UFS Council.

The conference was facilitated by Ms Vuyo Mahlati, previously from the WK Kellogg Foundation’s Africa programme and opened by Ms Thoko Didiza, Minister of Agriculture and Land Affairs.

“The colloquium formed the basis of an induction workshop during which a group of 150 individuals (50 teams of three) from all nine provinces, identified to initiate the implementation of the national programme, was trained and orientated towards an induction manual in collaboration with Hand-in-Hand, an Indian counterpart,” says Prof Swanepoel.

Dr Stroebel and Mr Benedict Mokoena formed part of the team to conceptualise and finalise this training manual. The induction training includes a case study of a successful community self-help partnership model, namely the MUCPP at the UFS. Prof Wessels and Mr Mokoena are both playing a leading role in the further development of subsequent training initiatives throughout South Africa, in partnership with the relevant provincial departments.

“The involvement of the UFS in the programme is a compliment to us. It reflects the value government sees in the use of academics and experts in the management of the ASGI-SA initiative. It is also an indication of one of the aims of the UFS to play a role in South Africa and Africa and in the transformation and change that is taking place in our country,” says Prof Swanepoel.

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

Back

Economic and Management Sciences

Education

Health Sciences

The Humanities

Law

Natural and Agricultural Sciences

Theology and Religion

Open Distance Learning

Business School

We use cookies to make interactions with our websites and services easy and meaningful. To better understand how they are used, read more about the UFS cookie policy. By continuing to use this site you are giving us your consent to do this.

Accept