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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 gives recognition to excellent researchers

2004-11-16

p>The University of the Free State will give recognition to excellent researchers at UFS on Tuesday 16 November 2004. “This recognition function will also serve as the first annual lecture in research excellence,” says Prof Frans Swanepoel, Director of Research Development Division at the UFS.

This is the first occasion of its kind in the UFS. It coincides with the university’s centenary celebrations. The recognition of excellent research shows the UFS’s commitment and innovative focus on research as one of its core functions,” says Prof. Swanepoel.

Recognition will be given in different categories. They are female researchers, black researchers, young researchers, C- and L-Rated researchers, researchers with significant research outputs, B-Rated researchers and distinguished professors in research.

The promotion of equity and development of research capacity of designated groups is one of the objectives of the UFS’s research strategy therefore the university is recognising the research achievements of 21 women and 16 black persons. Amongst these are Prof. Margaret Raftery (English and Classical Languages), Dr Liesl van As (Zoology and Entomology), Prof. Peter Mbati (head of the Qwaqwa campus) and Prof. Charles Ngwena (Constitutional Law and Philosophy of Law).

The UFS is also recognising nine young researchers. They must hold a doctorate and have the potential to establish themselves as researchers within a five-year period based on their performance and productivity as researchers during their doctoral studies and/or early post-doctoral careers. Amongst them are Dr Esta van Heerden (Microbial Biochemical and Food Biotechnology) and Prof. André Jooste (Agricultural Economics).

Fifty-eight established researchers with a sustained recent record of productivity are receiving recognition in the C- and L-rated researchers’ category. Amongst them were Prof. Hennie van Coller (Afrikaans, Dutch, German and French) and Prof. Gert Erasmus (Animal- and Wildlife- and Grassland Sciences).

Prof. Francois Tolmie (New Testament) and Prof. Gina Joubert (Biostatistics) are two of the twelve researchers that are receiving recognition for having excelled in research outputs during recent years.

Nine researchers are acknowledged in the B-category for the international recognition they receive from their peers for the high quality and impact of their recent research outputs. Amongst them were Prof. Johan Grobbelaar (Plant Sciences) and Prof. Hendrik Swart (Physics). Prof. Grobbelaar focused in his research on limnology, algal biotechnology, plant stress and Prof. Swart focused on solid state physics and degradation mechanisms that are responsible for the degradation of field emission and TV displays.

Seven individuals are recognised for their exceptional achievements as researchers. Prof. Frederick Fourie, Rector, but previously in the Department of Economics, is recognised for his research in two policy areas: Political Economics, Government Finance and Fiscal Policy, and Industrial Economics, in particular analysis of the South African industrial structure and competition policy, where his research contributions played a key role in reforming South Africa’s competition policy.

Prof. Lodewyk Kock (Microbial, Biochemical and Food Biotechnology) focuses in his research mainly on pure and oxidised edible oil where yeasts are used as a study model. He obtained national as well as international recognition for this research program.

The UFS is also awarding the S2A3 Bronze Medal to recognise a Master’s degree student who has delivered outstanding research in one of the sciences. Mr Pieter Taljaard and Ms Tania Venter are recognised in this category.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
16 November 2004

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