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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

A time to celebrate: Autumn graduations

2016-04-07

General graduation information
Livestreaming

The first series of graduations for the year are upon us. Graduates from all seven faculties, the Business School, and the School of Open Learning at the University of the Free State (UFS) will be celebrating their academic achievements. A total of 3681 qualifications will be conferred at ceremonies on the Bloemfontein Campus from 12 to 15 April 2016.

Sejakhumo Makhetha, daughter of our Vice-Rector: Student Affairs and External Relations, Dr Choice Makhetha, will be among the graduates receiving BA Governance and Political Transformation degrees. Coincidently, Dr Makhetha obtained her PhD in Political Science in 2003 at the UFS. Sejakhumo Makhetha is currently busy with her postgraduate diploma in the same field.

The four-day celebration symbolises the UFS prerogative as an institution to transform lives by producing leaders of tomorrow. Dr Muavia Gallie, Dr Sello Hatang, Dawie Roodt, and Nikiwe Bikitsha are expected to address these future leaders and guests at these ceremonies.

Addressed by the best

On the guest speaker line-up, we have Dr Gallie, a School and District Turnaround Strategist and education activist, who has been identified as one of the 10 Most Impressive Public Leaders for 2015 by the UFS Vice-Chancellor and Rector, Prof Jonathan Jansen. The former Head of Operations, Human Resources and Information and Communication Technology at the South African Council for Educators (SACE) has had more than 30 years of experience in education.

Dr Gallie and Dr Hatang will address graduates of the Faculties of Education, Health Sciences, Law, and Theology on 12 April 2016. Dr Hatang is the Chief Executive of the Nelson Mandela Foundation. In addition to being a founding member of the Advisory Council of the Council for the Advancement of the South African Constitution, Hatang has had the privilege of serving as the Head of Information Communications, and spokesperson for the South African Human Rights Commission as well as Director: South African History Archive at Wits University.

Dawie Roodt, founder, director, and chief economist of the Efficient Group, will speak at the Faculty of Economic and Management Science ceremony on 14 April 2016. This nationally-renowned economist boasts 30 years of experience in monetary and fiscal policy, and is one of the most referenced authors. In 2013, he published Tax, Lies and Red Tape.

As one of South Africa’s leading journalists, Nikiwe Bikitsha will draw on her 20-year career in radio, television, and journalism to address the Faculty of the Humanities graduates on the final day of graduations. Through her passion for Africa’s economic development and women empowerment, the co-founder and CEO of Amargi Media has been a successful Programme Director for UN, IMF and AU-related events.

Details of event

Dates: 12, 13, 14, 15 April 2016

Times: 09:00 and 14:30

Venue: Callie Human Centre, Bloemfontein Campus, University of the Free State

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