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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 policies want to help all students

2005-03-09

The death of Hannes van Rensburg, a first-year student from the JBM Hertzog residence, this past weekend, placed various aspects of student life in the spotlight. Dr Natie Luyt, Dean: Student Affairs at the University of the Free State (UFS), and the Student Representative Council (SRC) of the UFS explain which policies are in place to counter these practices.

At all tertiary institutions there are rules and policies to guide students and provide direction for certain behaviour and practices. The same applies to the University of the Free State (UFS).

“At the beginning of the year the UFS provides every residence committee with a manual to establish a framework for meaningful and orderly relations within and among residences on the campus,” said Dr Natie Luyt.

However, it is one thing to set rules, but it is an impossible task to enforce all aspects thereof. Policies currently in place include an alcohol policy, a policy on the induction of first years and a policy on banned practices in residence orientation.

“The alcohol policy was compiled in cooperation with students and their input was constantly asked,” said Dr Luyt. We also liaise on a continuous basis with residences and senior students to encourage the responsible use of alcohol, especially around activities like intervarsities and Rag.

In the policy, recognition is given to the right and voluntary and informed choice of every individual to use alcohol on the UFS campus in a responsible way.

Guidelines for the use of alcohol on campus include among others the following:

Only authorised points of sale will be permitted on campus. In this case it is the various league halls in most of the male residences on campus.

Alcohol will only be made available during fixed times and is not permitted in residence rooms.

All alcohol-related functions are regulated and an application for a temporary alcohol license must be obtained from the Dean: Student Affairs.

The UFS obtained a liquor license in March 2004 which must be administered by senior leagues in various residences on campus. Normal liquor license conditions and the county’s liquor laws apply. Liquor can only be sold to members of the senior league (or special guests) and also to persons over the age of 18 years. Liquor may not be used in public (outside the senior league) or on campus.

The senior leagues may only be open three nights per week and within prescribed times. No liquor could be used in any other place than the senior league halls. Senior leagues could buy liquor from club monies generated by themselves.

The right of senior leagues to serve liquor was suspended by the Rector and Vice-Chancellor the UFS, Prof Frederick Fourie, on Monday 7 March 2005 – pending an investigation of the recent events on campus.

The policy on banned practices include among others that no swearing and shouting at first-years may take place, no first-year student may be targeted individually, no senior may enter the room of a first-year student without an invitation or permission from that first-year student and no senior under the influence of alcohol may have contact with first-year students.

The induction of first-year students takes place by means of three functions, namely an information function (the introduction to the various facets and possibilities of the university system), an induction function (the first-year student becomes involved in various campus and residence activities) and a development function (the first-year student is motivated to take charge of his development potential).

No first-year induction activity may commence before the residence committee’s contracting with the senior students is not completed. This meeting is attended by the residence head and all senior students. The induction policy, residence induction policy of first-year students and first-year rules are discussed.

The senior students sign an attendance list to show that he/she was informed about the policies. A senior who does not sign, may not be involved with any induction session with first-year students.

No physical contact is allowed during the conclusion of the first-year students’ official induction period. The induction of first-year students as full members of the residence is a prestige event, presented by the residence committee. No physical or degrading activities may take place.

The Dean: Student Affairs also has a daily meeting with the primarii of all the residences during the induction period. This helps to monitor the situation and counter any problem behaviour or tendencies.

“Enforced behaviour – where a senior student forces a first-year student to do something against his/her own free wil – is not allowed. Where there is any sign of this, it is met wortel en tak uitgeroei,” said Dr Luyt.

“In any group of people – whether it is a group of students or people at a workplace – there will always be those who will break the rules or those who would like to see how far they could push it.

The SRC, the UFS management and myself are and will stay committed to make each student’s life on this campus a school of learning and an experience which would be remembered for ever,” said Dr Luyt.

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