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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 breakthrough on SRC

2005-06-10

The Council of the University of the Free State (UFS) today unanimously approved the establishment of a Central Student Representative Council (CSRC) to ensure the democratic participation of students at its three campuses in the governance of the university.

In a major breakthrough and transformation step for student governance, the Central SRC will include representatives of the main campus in Bloemfontein, the Vista campus and the Qwaqwa campus of the UFS.

The establishment of the Central SRC follows the incorporation of the Qwaqwa campus into the UFS in January 2003 and the incorporation of the Vista campus in Bloemfontein into the UFS in January 2004.

According to Dr Ezekiel Moraka, Vice-Rector: Student Affairs, today’s decision of Council is the result of a lengthy, negotiated agreement between the three campuses. Independent experts facilitated part of the process.

With the establishment of a Central SRC, the UFS has adopted a federal student governance model whereby the CSRC is the highest representative student body on matters of common concern for all students.

However, the three campuses of the UFS will retain autonomous SRC structures for each campus with powers and responsibilities for matters affecting the particular campus.

This arrangement will be reviewed after a year to make allowance for the phasing out of students at the Vista campus, as was agreed in the negotiations preceding the incorporation of that campus into the UFS.

The central SRC will have a maximum of 12 members made up of members of the campus SRCs, including the presidents of these three SRCs. In total, the main campus will have 5 representatives, the Qwaqwa campus will have 4 representatives and the Vista campus will have 3 representatives.

From these 12 members a central SRC president will be chosen on a quarterly basis to represent the general student body at Executive Management, Senate and Council.

In another key decision and significant step forward affecting student governance, the Council also approved amendments the constitution of the Student Representative Council (SRC) of the main campus. These amendments were the results of deliberations of student organizations, the SRC and the Student Parliament of the UFS main campus.

The amendments to the constitution of the main campus SRC determines that nine of the 18 SRC members must be elected by means of proportional representation and nine on the basis of an individual, first-past-the-post election.

This decision comes in the wake of calls by certain student organizations on main campus for proportional representation to be included as a means of electing student representatives.

The following portfolios of the main campus SRC will be contested by individual candidates on the basis of first past the post:

president
secretary
academic affairs
legal and constitutional affairs
student development
arts and culture
men’s internal liaison
ladies internal liaison
media, marketing and liaison

The following nine portfolios will be contested by affiliated organizations on a proportional representation basis.

two vice-presidents
treasurerdialogue and associations
transformation
campus affairs and recreation
sport
international affairs
community service

It also is a breakthrough to have all constitutional changes processed and approved at the June meeting of the Council, with all relevant student organizations having been part of the process and accepting the outcome of the process.

According to the chairperson of the UFS Council, Judge Faan Hancke, today’s unanimous decisions on student governance are an indication of how all UFS stakeholders represented in Council are committed to finding win-win solutions in the interest of the university.

“Once again the UFS has reached another milestone in its transformation and has shown the rest of the country that we are pioneers in the field of reaching intelligent solutions to complex situations,” Judge Hancke said.

According to Dr Moraka, the central SRC constitution will come into effect from the start of the second semester this year.

MEDIA RELEASE

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

10 June 2005

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