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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

State of our campuses: Impact of non-completion of the 2016 academic year on UFS students

2016-10-08

Dear Parents/Guardians and Students,

Impact of non-completion of the 2016 academic year

The University of the Free State (UFS) reiterates its support and commitment to the cause of free higher education. We have stated our position in all the available spaces. We want to work with UFS students to put pressure on the government to commit itself to accept the many suggestions put forward to make free education possible within a negotiated timeframe.

We are also seriously committed to our responsibility of providing education to all students enrolled at the university. We are doing our outmost to ensure that we can resume academic activities next week.

Description: " Academic non-completion 2016 Tags: " Academic non-completion 2016

We want to bring to your attention what will happen to individual students if the UFS cannot resume classes fully on Monday 10 October 2016.

Currently we have extended the academic year by one week. Some faculties are working on Saturdays and Sundays, starting earlier and finishing later to complete the material that needs to be taught and the practical work that students need to do to be able to write exams.

In the three biggest faculties at the university: Education, the Humanities, and Natural Sciences, this is what will happen:

Education will fail to graduate 1 193 students
Humanities will fail to graduate 1 125 students
Natural and Agricultural Sciences will fail to graduate 1 390 students

In the professional faculties: Economic and Management Sciences, Health Sciences, and Law, this will happen:

Economic and Management Sciences will fail to graduate 997 students
Health Sciences will fail to graduate 633 students
Law will fail to graduate 619 students

In total, approximately 6 000 students will not receive complete transcripts of their degrees and the certificates for their qualifications.

The university currently has 3 238 students on NSFAS bursaries. None of these students will be able to apply for bursaries for the lost year. They will be regarded as having failed or not completed their courses. They will not only miss this year, but the opportunity of studying in the future.

These students come from families to which their success in higher education was supposed to mean a change in the future of the entire family. Some parents/guardians hold more than one job to be able to pay tuition fees.

In not allowing the year to continue and students to finish, we are throwing away the efforts that entire families of poor people have made for four or five years to put their children through university. The promise of free education for future generations means nothing to these families who are poor in the present.

In terms of the academic calendar, it is a false argument to say that universities will be able to enrol first-years, because what 2016 students will miss, is the second semester.

We do not have the capacity to teach double the number of students in the second semester. This also misses the point that those students who were completing modules in order to graduate, will waste an entire year (assuming they have funding) to complete their degrees. This argument does not see the knock-on effect that students, not promoting in modules from first to second and second to third year, etc., will have. Finally, this also misses the point of what will happen to students who have to repeat first-semester modules.

In terms of academic staff, students are discounting the willingness of academic staff to teach double or to have the academic year extended by approximately six weeks between teaching and examinations. The same can be said for all the administrative and support staff required for running the university.

In our case, all the students in the University Preparation Programme (UPP) on the South Campus in Bloemfontein will be stuck without being able to move into mainstream modules, preventing a new intake of UPP students for 2017. These are the poorest and most disadvantaged students at the UFS.

It is absolutely necessary to find a means of protest and political action that will not jeopardise the future of current students and the country’s desperate need for critical skills. The interdict against violent protest secured by the UFS is still in force. The police will intervene if the interdict is not respected and the UFS will have no control over police actions.

We trust that parents/guardians and students understand the implications of the situation.

Kind regards,

Prof Nicky Morgan
Acting Rector
University of the Free State

Released by:
Lacea Loader (Director: Communication and Brand Management)
Telephone: +27 51 401 2584 | +27 83 645 2454
Email: news@ufs.ac.za | loaderl@ufs.ac.za
Fax: +27 51 444 6393

State of our campuses #11: Academic activities on UFS campuses continue

State of our campuses #10: Impact of non-completion of the 2016 academic year on UFS students

State of our campuses #9: Academic programme on all UFS campuses to resume on Monday 10 October 2016

State of our campuses #8: UFS extends vacation as from 28 September until 7 October 2016, 28 September 2016

State of our campuses #7: All three UFS campuses will be closed today, 27 September 2016.

State of our campuses #6: All UFS campuses reopen on Tuesday 27 September 2016

State of our campuses #5: UFS campuses to remain closed on Monday 26 September 2016

State of our campuses #4: Decisions about the UFS academic calendar

State of our campuses #3: UFS campuses closed until Friday 23 September 2016

State of our campuses #2: UFS Bloemfontein and South Campuses closed on Tuesday 20 September 2016 (19 September 2016)

State of our campuses #1: Academic activities suspended on UFS Bloemfontein Campus (19 September 2016)

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