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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

New multi-purpose residences open in January 2015

2014-06-18

The UFS is currently busy with exciting new accommodation developments on both the Bloemfontein and Qwaqwa Campuses.

This includes a new residence with a hotel and a conference/lecture hall on the western part of the Bloemfontein Campus and the building of another residence on the Qwaqwa Campus.

“We have done what was possible in our quest to maximise the number of beds available in the older residences on the Bloemfontein Campus,” says Quintin Koetaan, Senior Director: Housing and Residence Affairs at the UFS. “This we achieved by converting underutilised and unutilised dining halls and kitchens into bedrooms, which was totally insufficient to address the dire need for beds.”

“The new residence building will have different types of accommodation. I am very excited and look forward to the completion of this project. And this particular residence also brings a very exciting architectural design to the university environment.”

The residence, with multiple blocks for different accommodation, will be wheelchair friendly and numbering and signage will also be in braille. This futuristic-designed building will stand the test of time and will be provide student accommodation until 2030.The R60 million project is funded by the UFS and the Department of Higher Education and Training.

In step with international university accommodation trends – as with Yale's residential college system – this residence will house female first-years who will be mentored by postgraduate students. Postgraduates will be headhunted with the support of the Student Representative Council’s (SRC) postgraduate committee. These postgraduate students will represent all the faculties. Block A and B will accommodate 184 female first-years.

Each floor in this residence will have a study room, two lounges, a kitchen and a laundry for 25 students. Security will be very tight, with three levels of security: entrance to residence, corridor and individual bedroom door. There will also be perimeter camera surveillance and a security officer outside and inside the residence.

Block C will accommodate postgraduate students. The ground floor will house eight single-bed roomed flats. The first floor will have 16 single rooms sharing a bathroom, kitchen and living room, as well as one double room with its own bathroom. The second floor will have 21 single rooms sharing a bathroom, kitchen and living room.

Block D will house 18 hotel-like en suites, with a dining room where breakfast will be served. The target market here will be visiting academics and other university-affiliated visitors. Prices will be competitive to those of local guesthouses and hotels.

Bookings have already opened. Guests will be able to book in and access the hotel desk 24/7. The dining room, accommodating up to 60 people, will not only be open for hotel guests, but also for postgraduate students and UFS staff. Bookings will therefore be essential.

The expansion of bed spaces also took place at the Qwaqwa Campus. In 2012 a 200-bed residence with a state of the art computer room was completed. As a follow-up to this development, another 248-bed residence is now being built. In this particular residence, there will be designated post-graduate accommodation for 48 students.

The project will be handed over at the end of October 2014, with the first intake planned for January 2015.

Another development at the Qwaqwa Campus is the Chancellor’s House Bed & Breakfast. This B&B, with its 5 en suite rooms, is open for business for all UFS staff.

For enquiries or bookings at this new accommodation facility, contact:

- Undergraduate (first-year ladies’ residence):
Monica Naidoo at +27(0)51 401 3455 or NaidooM@ufs.ac.za

- Postgraduate:
Hein Badenhorst at +27(0)51 401 2602 or BadenH@ufs.ac.za

- Hotel:
Ilze Nikolova at +27(0)51 401 9689 or NikolovaI@ufs.ac.za

- Chancellor’s House Bed & Breakfast on Qwaqwa Campus:
Olga Molaudzi at +27(0)58 718 5030 or molaudziOD@qwa.ufs.ac.za

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