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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 experimental farm to be redesigned as a training facility

2004-10-25

Back fltr:
Dr Léan van der Westhuizen, Manager: UFS Sydenham Experimental Farm; Prof Herman van Schalkwyk, Dean: Faculty of Natural and Agricultural Sciences at the UFS and Councilor Thami Stander, Chairperson: Mangaung Municipal Portfolio for Agriculture and Rural Development

Front fltr:
Mr Hanz Nketu, Chairperson: Free State Legislative Committee on Agriculture and Mr Peter Frewen from the Free State Legislature

The Faculty of Natural and Agricultural Sciences of the University of the Free State will soon sign a tri-partite cooperation agreement with the National African Farmers Union (NAFU) and the Mangaung Local Municipality with the aim of providing training and mentorship to small-scale and emerging farmers, including those recently settled under the on-going land redistribution programme.

The agreement is part of the Faculty’s strategic plan to support the on-going reform process in the country, of which Black Economic Empowerment in Agriculture (Agri-BEE) is an important part. The Free State Provincial Department of Agriculture is also actively supporting this initiative.

Under the plan, the Faculty is redesigning its experimental farm, located about 12 kilometers south of Bloemfontein, as a training facility to build up skills in among others broiler and egg production, dairy farming, animal husbandry, piggery, sheep and goat production. The idea is to introduce a comprehensive package that empowers the small and emerging farmers and the local communities adjoining the farms through simultaneous investments in research, extension, and practical agricultural training.

Learnerships are also being drawn up to provide productive skills in order to contribute to addressing the national skills gap and enhancing opportunities for both self and wage employment.

The residents of the adjoining informal settlement known as Mangaung Phase II where unemployment is currently at extremely high levels are primary targets of this component of the project. The Faculty intends for this project to service the farming communities of the Free State Province and gradually spread to other Provinces in the country.

Having recognised this training programme as a potential instrument for achieving “a united and prosperous agricultural sector”, the Free State Legislature has shown considerable interest in the programme.

Following a preparatory visit to the farms by the Agriculture Committee of the Free State Legislature a request was made to the Faculty to host a larger visit by the Legislative Committees of the Free State, North West and Eastern Cape Provincial Legislatures on Monday 25 October 2004 and present details of the training programme.

The President of NAFU in the Free State Province, Mr Nox Nonkonyana, the Dean of the Faculty of Natural and Agricultural Sciences, Prof Herman van Schalkwyk, the Chair of the Mangaung Municipal Portfolio for Agriculture and Rural Development, Councilor Thami Stander, and the Chairperson of the Free State Legislative Committee on Agriculture, Mr M Nketu, will address the Legislators during the occasion.

Prof Herman van Schalkwyk

Dean: Faculty of Natural and Agricultural Sciences

University of the Free State, Bloemfontein

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

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