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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

Research conducted on economic impact of recent international soccer and rugby matches for Bloemfontein

2004-09-09

The Centre for Development Support at the University of the Free State (UFS) recently conducted a survey on the economic impact of the international soccer and rugby games that were played in Bloemfontein earlier this year.

The research focused on the soccer match between Bafana Bafana and the Cape Verdic Isle and the rugby match between the Springboks and Ireland .

“The survey was done as a result of a research agenda about local economic development in Bloemfontein ,” said Dr Lochner Marais, researcher at the centre.

“We conducted the research by doing 402 interviews with soccer supporters and 376 interviews with rugby supporters from outside Bloemfontein ,” said Dr Marais.

The centre distributed questionnaires, collecting the following information on the soccer and rugby supporters: their age, gender and origin, the number of nights spend in Bloemfontein , their household expenditure in Bloemfontein and their rating on the quality of service.

“It is estimated that 10 800 soccer supporters and 27 000 rugby supporters came from outside Bloemfontein . Of the rugby supporters 14,4% were female and 85,6% were men. For the soccer international the percentage was 33% females and 67% males,” said Dr Marais.

The highest number of people who came to watch the soccer game in Bloemfontein (35,8%) was from the Northern Free State . The rugby supporters mainly came from Gauteng (21,8%) and the Northern Free State (18%).

When visiting Bloemfontein soccer supporters spend R912 per household, whilst rugby supporters reached deeper in their pockets and spent R1 807 per household.

“The survey indicated that the two international matches resulted in approximately R58 million been spent in Bloemfontein . Rugby supporters were accountable for the largest part (R48 787 205) spent. The largest chunk of the money spent was on accommodation (R14 593 279). On average soccer and rugby supporters from outside Bloemfontein spent 1,4 and 1,9 nights in Bloemfontein ,” said Dr Marais.

Rugby and soccer supporters were also asked to rate the quality of service received from amongst others hotels, guest houses, restaurants, and transport and entertainment facilities. Soccer supporters rated their satisfaction with services higher as rugby supporters. The rugby supporters gave the services at hotels a 3,9 rating, whilst soccer supporters awarded 4,6 rating out of a possible five.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
9 September 2004

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