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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

Ensure your place at the UFS

2010-10-27

The University of the Free State (UFS) appeals to all prospective South African students who want to come and study at the UFS in 2011 to submit their applications no later than Tuesday, 30 November 2010.

The UFS is aware of the fact that learners will not have received their final Grade 12 results by Tuesday, 30 November 2010; therefore provisional admission will be granted based on learners’ most recent Grade 12 results. Final admission will take place upon receipt of the final Grade 12 results, which will be available early in January 2011.

Prospective students can obtain application forms for admission at the following places:

The UFS’s web site at www.ufs.ac.za,
The Information Office (Unit for Prospective Students) at the Thakaneng Bridge on the UFS’s Main Campus in Bloemfontein,
You may also send an e-mail to info@ufs.ac.za or
Phone 051 401 3000 and the necessary forms will be posted to you.

Senior undergraduate students (that is all students who were registered up to and during 2010 at the UFS) as well as post-graduate students, must self-register electronically on-line from Monday, 1 November 2010 until Tuesday, 4 January 2011. This includes master’s and doctoral students.

In order to encourage senior students to register online, the UFS offers 20 laptops as incentives for the senior students who successfully register online from 1 November 2010. These laptops will be handed over to the winners after the registration process in 2011.

Registration of first-year students:

The Rector and Vice-Chancellor, Prof. Jonathan Jansen, will welcome first-year students on Friday, 14 January and Saturday, 15 January 2011, respectively, in the Callie Human Centre. The Faculties of Economic and Management Sciences, the Humanities and Education will be welcomed on 14 January 2011 and the students of the Faculties of Natural and Agricultural Sciences, Law and Theology shall be welcomed on 15 January 2011. The compulsory orientation programme for new first-years will also then commence.

From 17 to 21 January 2011 first-year students will receive academic advice at the Callie Human Centre, whereafter they will be referred for self-registration. These processes will take place according to the set timetable. This timetable is available in the Kovsie Guide that will be sent to learners as soon as we have received their applications, as well as on the web site of the UFS at www.ufs.ac.za/register2011.

First-year students’ fees must be paid prior to arrival on 14 and 15 January 2011.

Registration of senior students:

Senior students who experience problems with the electronic on-line self-registration process have the opportunity to resolve problems within a programme on campus from Wednesday, 5 January until Wednesday, 12 January 2011. This programme will be sent out to students and is also available at www.ufs.ac.za/register2011. The specific scheduled day for senior students to resolve problems is the last and only day to resolve the problem.

Senior students can also contact 051 401 9111 for more information in this regard.

Students may register for prescribed modules for 2011, even though the November 2010 examination results are not yet available. Changes resulting from examination results that are made available later can be done up to and including 28 January 2011.

In terms of applications for senior students, only students who have interrupted a calendar year of study need to re-apply for admission.

Registration of students at the UFS’s Qwaqwa Campus:

Senior and first-year students of the UFS’s Qwaqwa Campus register from Wednesday, 12 January until Friday, 28 January 2011 in the Nelson Mandela Hall on this campus.

Registration of students at the UFS South Campus:

First-year students from the UFS’s South Campus in the University Preparation Programme and the Extended Programme (only Natural and Agricultural Sciences) register from Monday, 24 January till Friday, 28 January 2011 in the Arena Hall on the South Campus.

Students who have successfully completed the University Preparation Programme register with the first-year students on the UFS Main Campus on Friday, 14 and Saturday, 15 January 2011 – according to faculties (cf. paragraph 6).

Lectures for all students shall commence on Monday, 24 January 2011.

MEDIA RELEASE
Issued by: Lacea Loader
Director: Strategic Communication (actg)
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: loaderl@ufs.ac.za
26 October 2010

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