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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 sets trend for higher education institutions

2005-09-21

The University of the Free State (UFS) offers more service-learning courses than any other higher education institution in the country and has the highest number of students enrolled for these service-learning courses.

This was the research findings on higher education institutions conducted between 2001 and 2004 by the Joint Education Trust (JET) into service-learning courses. These are courses which seek to integrate service to the community into the academic core of higher education institutions.

The results of this research indicated that the UFS is one of the few higher education institutions in South Africa that have made progress in integrating community engagement into the mainstream academy.

According to the findings 2 233 students at the UFS participated in service-learning courses supported by JET, while 858 students at the University of Transkei (UNITRA), 636 students at the University of the Western Cape (UWC) and only 600 students at the University of the Witwatersrand (WITS) participated in service-learning courses.

In total there were 6 930 students participating in service learning courses supported by the JET at 10 institutions throughout the country.

The research also found that out of a total of 182 service-learning courses supported by JET countrywide, the UFS had the highest number of such courses at 42, followed by WITS with 28, the University of Kwazulu Natal with 26, UWC 24 and UNITRA with 22.

Nationally, most of the service-learning courses at higher education institutions are offered in the human sciences (62), followed by health sciences (37), education (26), agriculture (14), and economic sciences (11).

According to leading academics, service-learning is a credit-bearing, educational exercise in which students participate in an organised service activity that meets identified community needs and helps the student to gain a deeper understanding of course content and a sense of civic responsibility.

Reacting to the research findings, the Rector and Vice-chancellor of the UFS, Prof Frederick Fourie, said the university feels strongly that there should be integration of service-learning into the academic core of the institution.

“Through service-learning modules the UFS can give expression to its role of service to the community as an institution of higher learning, producing quality graduates who understand the communities in which they will have to function for the rest of their lives,” Prof Fourie said.

According to Mr Jo Lazarus, the project manager of the Community-Higher Education – Service Partnership (CHESP), which falls under the JET, a number of institutions have identified community engagement as a strategic priority and have allocated significant resources from their central budget towards its implementation.

Mr Lazarus said most students have an overwhelmingly positive attitude towards service learning.

“A large percentage of students surveyed indicated that their service-learning course helped to improve their relationship skills, leadership skills and project planning abilities. As significant is the fact that these courses also benefited them in terms of their awareness of cultural differences and opened their eyes about their own cultural stereotypes,” said Mr Lazarus.

“The key challenge still hampering the integration of service-learning as a core function of academic activity is that some institutions still see service-learning as an add-on, and nice-to-have activity,” he said.

According to Mr Lazarus higher education must demonstrate social responsibility and commitment to the common good by making available expertise and infrastructure for service-learning as a form of community engagement.

Media release
Issued by:  Lacea Loader
   Media Representative
   Tel: (051) 401-2584
   Cell: 083 645 2454
   E-mail: loaderl.stg@mail.uovs.ac.za
   20 September 2005

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