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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

Multi-disciplinary research approach at UFS

2005-10-25

UFS follows multi-disciplinary research approach with opening of new centre

“A new way of doing business in necessary in the research and teaching of agriculture and natural sciences in South Africa. We must move away from departmentalised research infrastructures and a multi-disciplinary approach to research involving several disciplines must be adapted,” said Prof Herman van Schalkwyk, Dean: Faculty of Natural and Agricultural Sciences at the University of the Free State (UFS).

Prof van Schalkwyk delivered the keynote address during the launch of the Centre for Plant Health Management (CePHMa) at the Main Campus in Bloemfontein today (21 October 2005). CePHMa is an initiative of the UFS Department of Plant Sciences.

According to Prof van Schalkwyk a tertiary institution must practice multi-disciplinary research to be a world-class research institution. “It is difficult for researchers to admit that they do not know a lot about each other’s area of speciality. It is therefore necessary for researchers to make a paradigm shift and to focus on inter-disciplinary co-operation. To do this, we must encourage them to work together and to find a common language to communicate ideas en establish symbiotic relationships,” said Prof Van Schalkwyk.

“We tend to think that research is better and faster if it is specialised. This is not true. The new generation of scientists are young and they are trained to form a concept of the total system and not to focus on a specific area of speciality. At the UFS we encourage this approach to research. This was one of the main reasons for the establishment of CePHMa,” said Prof Van Schalkwyk.
CePHMa is the only centre of its kind in Africa and is established to extend the expertise in plant health management in South Africa and in Africa, to train experts in plant health and to conduct multi-disciplinary research about the health of agricultural crops.

“CePHMa is a virtual centre comprising of ten disciplines applicable to crop production and crop protection,” said Prof Wijnand Swart, Chairperson of CePHMa during the opening ceremony.

“The UFS is the leading institution in Africa in terms of news crop development and manages three research programmes that concentrate on new crops, i.e. the New Crop Pathology Programme, the New Crop Development Programme and the Insects on New Crops Programme. Other applied research programmes that are unique to the UFS are genetic resistance to rust diseases of small grain crops and sustainable integrated disease management of field crops,” said Prof Swart.

“Because the expected growth in population will be 80% in 2020 in sub-Saharan Africa, the future demands of food produce in Africa will be influenced. Therefore research will in future be focused on ways to improve food security by employing agricultural systems that are economically viable and environmentally sound,” said Prof Swart.

“Thorough knowledge of the concept of holistic plant health management is crucial to meet the challenge and it is therefore imperative that innovative crop protection and crop production strategies, with particular emphasis on plant health, be adopted. This is why the Department of Plant Sciences initiated the establishment of CePHMA,” he said.

According to Prof Swart there is a shortage of expertise in plant health management. “The UFS has shown the potential to address the demand of the sub-continent of Africa regarding expertise training and CePHMa is the leader in southern Africa to provide in this need,” he said.

The appropriateness and quality of training in plant health management is reflected in the fact that students from Ethiopia, Eritrea, Malawi, Uganda, Zambia, Ghana, Tanzania, Cameroon, Angola, Mozambique and Lesotho have already been trained or are in the process of being trained in at the UFS.

Scientists from CePHMa have forged partnerships with numerous national and international institutions including the Agricultural Research Council (ARC), various community trusts, seed, pesticide and agricultural chemical companies, in addition to overseas universities.

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

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