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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 intensifies its advocacy on humanity and solidarity to Japan

2011-03-08

Staff and students from our university, marching for humanity
Photo: Stephen Collett

Staff and students from the University of the Free State (UFS) representing various associations and student bodies, together with Kovsie supporters, braved the cold and wet weather yesterday (17 March) as they embarked on a march for humanity. This occurred just two days after an urgent meeting had been called by the Dean of Student Affairs, Mr Rudi Buys to create a platform for students to deliberate on mechanisms to be used in supporting Japan, which is facing immense challenges, thereby responding to their unfortunate current situation. It is also a day after the direct conversation between the UFS and the South African ambassador to Japan, Mr Gert Grobler, a Kovsie alumnus.

The visibly spirited group started their march from the Main Building on the UFS Main Campus in Bloemfontein. Within minutes the Callie Human Centre – assembly point for the participants – was occupied by students and staff members who arrived in their numbers, carrying banners with messages of support for Japan.

Modieyi Motholo, ISC Chairperson, read a memorandum in the presence of more than 300 students. “We, the community of the University of the Free State, as sons and daughters of South Africa and the world, by our very action in this march today, celebrate our shared humanity, declare our solidarity with the people of Japan, and join the movement to build a culture of Human Rights. We declare our commitment to the cause of human dignity and equality, and the promotion of human rights, non-racialism and non-sexism,” read the memorandum.

“Japan is far; we shall never be able to take the entire Kovsie community there to assist the Japanese in rebuilding their homes. However, we can show our solidarity and raise an awareness for their unfortunate circumstances by our numbers,” Modieyi said.

Mr Buys admitted to being overwhelmed by the united Kovsie community he witnessed standing up for a cause they believed in. On receiving the memorandum on behalf of the UFS management, he stated: “There is a different and new set of values in our student community. We have the best students in the world, driven by a pioneering spirit aimed at building a new society. We have come so far in a short period of time. You deserve recognition as a student population.”

The march was also organised to declare the UFS’s support and solidarity for the people of Japan. The solidarity campaign has further been intensified with the establishment of committees comprising fundraising, research, marketing and awareness, spirituality and volunteers. Nida Jooste, the ISC Vice-Chairperson, said that the research committee was busy conducting a comprehensive study on how the UFS can be of assistance to the Japan. “With the report we will be able to design and implement programmes that will be aligned with the needs of the people of Japan. “In the meantime, we will carry out small projects that will keep the flame of solidarity burning on our campus,” she concluded.

Noticeable amongst the attendees were Mr John Samuels, the current Director of the International Institute for Studies in Race, Reconciliation and Social Justice.

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