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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

Fundraising campaign launched to help feed hungry students

2012-03-28

From the left is Dr. Carin Buys (Patron of NSH), Ms. Nicky Abdinor (guest speaker), Mrs. Grace Jansen (patron of NSH) and Redi Tlhabi (master of ceremonies).
Photo: Johan Roux
28 March 2012

Video clip (YouTube)

The University of the Free State (UFS) received over R200 000 for its No Student Hungry (NSH) Programme at the NSH launch dinner on Friday 23 March 2012 in Bloemfontein.

Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS as well as founder of the NSH Programme donated R100 000 from the proceeds of his book We Need to Talk to this programme. Standard Bank also donated R30 000.

An additional amount of about R90 000 was raised by means of pledges made by guests and the auctioning of several items. These items were donated by local companies and university staff.

The No Student Hungry Programme (NSH) aims to raise funds to provide modest food bursaries for needy students and give them daily access to a balanced meal.
Prof. Jansen started the NSH programme in 2011 with the proceeds of his book, We Need to Talk.

The NSH funds more than 100 students in the hope of helping them to excel in their academic endeavours and, ultimately, to obtain their degrees.

In 2011, Prof. Jansen discovered that a significant number of students were studying without eating on a regular basis. These were often students with strong academic records but without adequate funding to sustain themselves with regular meals.

The project was established in January 2011 when the NSH Team started to develop the structure and processes of the programme. The first 100 students who were awarded the food bursaries started using their student cards for daily meals on campus on 1 April 2011.

“The No Student Hungry Campaign is not only about creating a university campus that cares. It is about creating a country where being human matters. Our students on the NSH project are amazing young people. They struggle to get by, but they have great potential and achieve good marks," Prof. Jansen said on Friday.

Prof. Jansen’s wife, Grace, and Dr Carin Buys, wife of Mr Rudi Buys, Dean of Student Affairs, volunteered to drive the programme and raise funds to address the problem. They are supported by various divisions within the university.

Students apply for the bursaries and are selected on the basis of their financial needs, good academic results, active participation in student life programmes and commitment to give something back to the community.

The raising of funds is a continuous process involving awareness campaigns, seeking of partnerships with companies and institutions and support from the general public, staff and individuals.

An agreement has been made with several food outlets/restaurants on campus who offer healthy, balanced meals to NSH students when they swipe their student cards that are funded by the programme.

At the end of the year the process is reviewed and students who still qualify are reinstated on the programme, whilst those whose circumstances have changed or are no longer in need of the bursaries, make way for new applications.

The NSH Team meets with students on a regular basis with the purpose of offering training, motivation and opportunities for personal growth and career development. Students are also expected to become involved in projects as a way of ploughing back into the community.

The goal is to expand the project annually as support for it grows.
Ms Nicky Abdinor, a clinical psychologist from Cape Town, who was born without arms and with shortened legs, provided an entertaining motivational speech at the launch. Ms Abdinor, founder of the Nicky's Drive organisation, also visited the UFS’ Unit for Students with disabilities where she delivered a talk on independence for people living with disabilities.

To become involved with the NSH Programme, please contact Mrs René Pelser on +27(0)51 4019087 or e-mail pelserr@ufs.ac.za.

Media Release
28 March 2012
Issued by: Lacea Loader
Director: Strategic Communication
Tel: +27(0)51 401 2584
Cell: +27(0)83 645 2454
E-mail: news@ufs.ac.za

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