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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

Faculty of Law establishes unique panel of advisors

2005-11-11

Photo: Stephen Collett

Some of the panel members who attended the Collegium Iurisprudentium of the Faculty of Law at the UFS were from the left His Honorable Judge of Appeal Lex Mpati (Vice-President of the Supreme Court of Appeal), His Honorable Judge of Appeal Joos Hefer (former Chief Justice of South Africa), His Honorable Judge of Appeal Frits Brand (Supreme Court of Appeal) and Mrs Alet Ellis (lecturer at the UFS Faculty of Law).

At the back from left were Prof Johan Henning (Dean: Faculty of Law at the UFS), His Honorable Judge Faan Hancke (High Court of the Free State and chairperson of the UFS Council) and Adv Jannie Lubbe Sc.

The Faculty of Law at the University of the Free State (UFS) has established a panel of advisors comprising of all the honorary and extraordinary professors of the faculty.

“The faculty has been known for its excellent practice-orientated training as well as the involvement of law practitioners in the training of LL B-students,” said Prof Johan Henning, Dean of the Faculty of Law at the UFS.

“The faculty was greatly dependent on the services of advocate lecturers, full-time members of the Bar and Side Bar who lectured on a part-time basis at the faculty. For this reason lecturing in the faculty was mainly done after-hours to part-time students,” said Prof Henning.

With the shift in emphasis to full-time lecturing and the appointment of full-time lecturers, especially because of the increasing student numbers, the full-time LL B-programme and the increasing pressure on students for quality research inputs, a greater need for meaningful contributions of judges and senior law practitioners to the faculty was experienced.

“To comply with this urgent need, three honorary professors and nine extraordinary professors were appointed. This group of experts deliver an indispensable contribution to the practice orientation of the faculty by means of formal lectures, public inaugural lectures and guest lectures, direct lectures to graduate and post-graduate students, participation in research projects and the constant evaluation of lecturers, modules and the content of modules and learning material. The international exposure of students and lecturers is also promoted by their contribution,” said Prof Henning.
“A need to have the involvement of this special class of professors structured in a more organised way was identified and a decision was made to establish an advisory panel called Collegium Iurisprudentium. It is a privilege to us that all the honorary and extraordinary professors accepted the invitation,” said Prof Henning.

The panel will provide the faculty with continuous, distinguished, practice- orientated capability and capacity as well as international expertise, not only for direct inputs to students but also to advise lecturers about the curriculum, the compilation of the content of the LL B and M module, learning material and others, as well as to strengthen the research capacity of the faculty.

“The panel will also deliver a decisive contribution to the faculty’s preparation for the constitutional audit of the Higher Education Quality Committee (HEQC) of the Council for Higher Education (CHE) that will take place in October 2006,” said Prof Henning.

The Collegium Iurisprudentium, which has been formally constituted, comprises of:

Appeal Court Judge J J F Hefer,
Appeal Court Judge L Mpati
Appeal Court Judge F D J Brand
Appeal Court Judge I G Farlam
Prof B A K Rider
Judge S P B Hancke
Judge A Kruger
Judge D H van Zyl
Adv S J Naudé
Adv J Lubbe Sc
Prof M M Katz
Prof R J Cook
Mr S van de Merwe
Mr W van der Westhuizen
Mr D C M Gihwala

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

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