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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

Statement on protest at the UFS

2005-03-04

Following a protest by student and non-student organisations today, the management of the University of the Free State (UFS) would like to place the following facts on record:

1. There is a well-documented process underway to further transform the UFS. At the official opening of the UFS on 4 February 2005 , the Rector and Vice-chancellor, Prof Frederick Fourie, announced that the UFS would draft a comprehensive Transformation Plan to guide the next phase of transformation at the institution.

The UFS appeals to student formations, staff associations, trade unions and other role-players to make a constructive input into this Transformation Plan.

The UFS management has been - and always will be - willing to engage with role-players and is prepared to do so even after today’s protest.

2. There is thus no regulation or policy prescription which separates students in hostels according to race.

The reality is that students exercise their freedom of choice as to which hostel they wish to be placed in. This was agreed upon by black and white students in 1997/8.

However, the unintended consequence and practice of this hostel placement policy has been that students themselves have tended to choose to stay in hostels which have over time become black hostels and white hostels.

This is a matter of concern for the management of the UFS as such a situation does not promote interaction across language, cultural and socio-economic groupings of students.

This matter is receiving attention and an intensive consultative process, which will include students, will be launched to review this policy.

The management is convinced that such interaction will enhance the learning experience of all students and sensitise them to the reality of a multicultural South Africa and a multicultural world.

3. No student organisation has been banned from operating at any of the three campuses of the UFS.

In the past few weeks, SASCO, the Young Communist League and the ANC Youth League (ANCYL) have held meetings on all three campuses, namely the Qwaqwa campus, the Vista campus and the main campus.

There are also regular interactions between top management and the leadership of SASCO and the ANCYL on campus.

In fact, the UFS upholds the right of students and staff to associate freely and to organise themselves as they see fit.

The UFS also upholds the rights of staff and students to engage in legal and peaceful protests.

The management however remains committed to discussing issues that affect staff and students in a constructive manner and appeals to student organisations in this case to engage with management.

4. The issues of registration, fees, debt and financial aid are continually monitored, and interventions to assist students are made regularly. To assist as far as possible those academically deserving students who face financial difficulties, the UFS management has put in place a structure called the Monitoring committee that includes management and student representatives.

The purpose of the Monitoring Committee is to review the cases of individual students to determine how best they can be assisted.

This applies to the Qwaqwa campus, the Vista campus and the main campus.

It is generally the case that students who perform academically will not have any difficulty in obtaining financial assistance. However, according to the requirements of National Student Financial Scheme, students who perform poorly will have difficulty in obtaining such assistance.

5. With regard to student governance, the process to institute an inclusive Central Student Representative Council (SRC), on which all three campuses will be equitably represented, was launched in July 2004, and a preliminary constitution has just been drafted. At the same time an inclusive process to review certain elements of the constitution of the main campus SRC was initiated at the end of 2004. This process, which includes all relevant student organisations and structures, is planned to produce an outcome within the next couple of months.

6. There is no policy at the UFS that is based on racism or that discriminates on the basis of the race of students and staff.

As part of the building of a new institutional culture within the broader transformation process, the UFS management is determined to eradicate all elements of racism that may occur on its campuses, and has already instituted inclusive forums on campus to discuss the issue of values and principles for a non-racial university.

Issued by: Mr Anton Fisher
Director: Strategic Communication
Cell: 072 207 8334
Tel: (051) 401-2749
4 March 2005

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