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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

Qwaqwa Campus’s Teaching and Learning Champs scoop up award

2014-10-24

Dr Elize Smuts (right) proudly displaying the UFS Vice-Chancellor’s Team Award. Equally ecstatic, is Qwaqwa Campus’s CTL Manager, Fred Mudavanhu.
Photo: Thabo Kessah

Action research to improve classroom practice and student success rates, recently received a boost when the Qwaqwa Campus’s Teaching and Learning (TL) Champions were honoured with the prestigious UFS Vice-Chancellor’s Team Award. The award was in recognition of the team’s efforts to enhance professional development and was accompanied by a R50 000 prize that will be utilised to further encourage and develop a scholarly culture on the Qwaqwa Campus.

“An active learning community has developed over the past four years, which led to the creation of a scholarly forum for sharing problems, experiences and new knowledge”, revealed Dr Elize Smuts, who has been the pillar of strength in the development of TL Champs.

“This”, Dr Smuts said, “has continuously motivated the group to persevere in challenging and often under-resourced circumstances.”

“Over a four-year period, 44 projects were undertaken, many with great success. Thirteen scholars participated in a pilot of CLASSE (Classroom Assessment of Student Engagement) in 2013. This survey, contextualised by staff from the Centre for Teaching and Learning, was a first in South Africa,” said Dr Smuts.

“The team undertook extensive literature reviews and attended numerous workshops on principles and practices of good teaching, research and writing. The two summarising booklets they prepared from two publications (How Learning Works: 7 Research-based Principles for Smart Teaching and Student Engagement Techniques) in 2013, will serve as guides and inspiration for the larger academic community of the UFS for many years.”

Since the formation of this team, TL scholars have presented 25 papers at 12 national and two international conferences.

“Taking into consideration that it is not easy to get an abstract accepted for presentation, these are impressive achievements,” Dr Smuts said.

“Some of the immediate results of scholars engaged in this project, include improved student success rates averaging 20% compared to only 8% improvement by academics who are not part of the project.”

“In 2013, one TL scholar reported student success rates that increased by 29%; another reported 80% on average; and another reported an increase from 65% to 95% in a class bigger than previous years.”

In congratulating the team, Centre for Teaching and Learning’s (CTL) Prof Annette Wilkinson said that she was very proud of the team.

“The team’s dedication and growth in scholarly practice – amidst challenging circumstances – are in my mind, the outstanding features of the project. I am very proud of the entire team”, said Prof Wilkinson.

The two presentations at international conferences were delivered by Ms Lea Koenig at the 32nd Annual Conference on the First-Year-Experience in Orlando, Florida and by Dr Elize Smuts in North Carolina. Both of these were presented in 2013.

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