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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 to send a second group of first-year students overseas

2011-03-23

Some of the students who were chosen in 2010

Following the resounding success of the University of the Free State’s (UFS) Student Leadership Development Programme in 2010, the UFS will send a second group of students to the USA in 2011 and also extend the programme by sending students to various universities in Europe and Asia.

This year a total of 150 first-year students will be selected compared to the 71 students that were selected last year. Last year’s group of students spent two weeks, between September and October 2010, at various universities across the United States.

The programme intends to expose the students to diverse cultures and enable them to learn leadership skills. The goal of the programme is to build a new class of UFS students who become leaders during their years of study and commit to building a non-racial community during and beyond their years at university.

Mr Rudi Buys, the UFS Dean of Student Affairs, says: “With the programme we want to develop participants’ thinking and capacity to lead in the contexts of diversity and change and we hope to direct them to programmes leading to change in student life in general upon their return.”

The three core purposes of allowing students an opportunity to study abroad are:

to introduce South African students to positive models of racial integration and integrated residential life;
to share and exchange ideas around issues of race, racism, racial integration and racial reconciliation, with undergraduate students abroad; and
to build long-term networking and collaboration between academics and researchers interested in scholarly work on themes of race, reconciliation and social justice.

Last year students were selected based on their ability to reflect critically on knowledge of societal issues and successful candidates were put through a preparatory development programme. They were divided into groups and given assignments to complete during the programme. A similar selection process will be undertaken this year.

Upon their return, last year’s group of students demonstrated extremely positive outcomes, during an assessment of the project’s goals and achievements. More than 80% of participants agreed that the course met all expectations; the content was meaningful and challenged their existing views. More than 90% felt that the course meaningfully addressed diversity. Among the successes achieved by the programme is the influence of participants in the student community.

Many serve as peer mentors for the Gateway First-Year Welcoming and Orientation Programme, while others serve as mentors in well-being and academic peer advisory programmes. Many have also been elected as members of executive committees of student associations and management committees in residences, while some have availed themselves to run for student governance structures throughout 2011 and 2012.

The programme proved to be so successful that it was decided to expand the number of students selected for the programme to 150 this year and first-year students are invited to apply. It is envisaged that 90 students will visit American universities, while 60 will visit institutions in Europe and Asia.

Last year the students were hosted by, amongst others, Cornell University, the University of New York, Cleveland State University and the University of Massachusetts.

Yale University, Amherst College and other American universities will join these host universities in 2011, in addition to the European and Asian institutions.

Those first-year students who wish to apply can find all the information at www.ufs.ac.za

Media Release
23 March 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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