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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

UFS Centenary celebrations come to an end

2005-02-03

OFFICIAL OPENING

The official opening of the UFS will take place on Friday 04 February 2005 at 09:00 in the Reitz Hall (Centenary Complex). Please note that this is a test and lecture free day. The Rector and Vice-Chancellor, Prof. Frederick Fourie will be the keynote speaker. Refreshments will be served at the Centenary Complex after the opening ceremony.

The historic Centenary photograph will be taken at 11:00 on the eastern side of the Red Square (CR Swart parking area). All staff members and students are invited to be part of this massive photograph.

Important

• There will be no parking allowed on the CR Swart parking area until 12:00 on Friday 04 February 2005, as a result of the photo session.

• All academic staff members are requested to wear academic dress on the day, seeing as staff members will depict the Centenary emblem on the photograph. Academic gowns may be collected from the Gown Store on Wednesday 02 - Thursday 03 February 2005 between 08:00 and 16:00. Gowns must be returned to the Gown Store after the photograph has been taken.

SERVICE OF DEVOTION

A special service of devotion will take place on Sunday 06 February 2005 at 18:00 for 18:30 in front of the Main Building on the Red Square. This is a special gathering of students, hosted by all the interdenominational groups on the UFS campus. The evening will be a celebration of praise, thanks and worship, followed by a message from Dr Wollie Grobler. The evening will conclude with song and fireworks.

Staff members and students are welcome to bring their friends and families to this special event.

Important

• Even though there will be chairs in front of the Main Building, staff members and students are requested to bring extra pillows and blankets to sit on.

• No persons or vehicles will be allowed on the eastern side of the Red Square or on the CR Swart parking area, due to the security requirements of the fireworks show.

• All members of the choir are invited to be part of the mass choir. Lyrics will be provided.

• All persons who attend this event are requested to bring a candle for the purpose of the mass choir.

• Special transportation arrangements will be made for all service workers to enable them to attend the service. If there is someone in your faculty, department or division who would like to make use of this service, please send an e-mail to Elize Rall (ralle.stg@mail.uovs.ac.za) no later than Tuesday 01 February 2005.

OTHER ACTIVITIES

• A reunion for all former SRC members of the UFS will take place on the campus, from 04 February to 06 February 2005. An interesting programme is being planned. For more information, please contact Nicolaas du Plessis on 084 955 0875.

• The annual Rag Procession will take place on Saturday 05 February 2005. For more information, contact the Rag Office at X 2718.

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