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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

Ford foundation funds higher education redesign

2005-06-23

The Ford Foundation has pledged a grant of almost R280 000 for redesigning higher education delivery at three campuses in the Free State.

According to Prof Magda Fourie, Vice-Rector: Academic Planning at the University of the Free State (UFS), the three campuses that will be affected by the strategic reconfiguration of higher education delivery are the Qwaqwa campus at Phuthaditjhaba and the Vista campus of the UFS in Bloemfontein and the Welkom campus of the Central University of Technology (CUT).

Prof Fourie says the three campuses were all affected by the restructuring of higher education, in line with the National Plan for Higher Education.

The Qwaqwa campus of the UFS that was part of the former University of the North was incorporated into the UFS in January 2003. Likewise the Bloemfontein campus of the former Vista University was incorporated into the UFS in January 2004.

The Welkom campus of the CUT was also part of the former Vista University and was incorporated into the CUT in January 2004.

“These incorporations pose a challenge in that we have to think creatively about the best ways of using these three campuses to service the higher education, training, skills development and human resource needs of the Free State,” Prof Fourie said.

“The grant from the Ford Foundation will primarily be used to draw up strategic funding proposals for the three campuses. The Qwaqwa campus of the UFS is a priority to us given the poverty and unemployment in a largely rural area of the Free State,” said Prof Fourie.

“A detailed consultation process will be undertaken in the Qwaqwa campus sub-region which will hopefully result in a comprehensive and a coherent suite of higher education activities being established on this campus,” said Prof Fourie.

“It is envisaged that the Qwaqwa campus will become a centre of excellence in the area of rural development. This vision is based on a focused integration of the core functions of a university – teaching, research, and community service – around the issue of rural development,” said Prof Fourie.

Prof Fourie said that various educational offerings including among others short courses, bridging and foundation programmes, and degrees could be offered, with a particular focus on providing courses of relevance to students from the local rural community and students from elsewhere with an interest in focusing on rural development studies.

She said the redesign of the three affected campuses is being managed as a project of the Free State Higher Education Consortium (FSHEC) consisting of all the higher education institutions operating in the Free State.

“The aim of the project is to establish how the Qwaqwa and Vista campuses of the UFS and the Welkom campus of the CUT can be used effectively to meet regional education and training needs, to serve the strategic priorities of the two higher education institutions and contribute to the sustainable development and poverty alleviation of the region,” she said.

The planning for the Vista campus of the UFS is still in an early stage. “We are looking at the possibility of developing this campus into a hub of education and training opportunities for Bloemfontein and Free State region. Further plans will be communicated later in the year,” said Prof Fourie.

Media release

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

23 June 2005

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