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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

Kovsie Tennis team defends proud USSA record in Cape Town

2015-12-01

In 2014, Kovsies won gold at the USSA Tennis Tournament for the eighth consecutive time. Six players from last year's 12-man squad are in 2015 in Cape Town again available. Photo: Johan Roux

Duke Munro already has six gold medals from the USSA Tennis Tournament in his cupboard, and the Kovsie Tennis team would wish to bid him farewell in a fitting manner during what will probably be his last tournament in Cape Town.

This year's tournament, taking place from 30 November to 4 December 2015, will probably be Munro's last, since he is completing his Master's degree in Quantity Surveying at the University of the Free State (UFS).

He has competed in the USSA Tournament since 2009, and would like to help his team defend its proud record.

UFS aim for ninth consecutive title

Kovsies have won gold at the USSA Tournament for the last eight years. They are the only team who have been able to win the tournament since the combined format was adopted in 2010. In 2007 and 2008, their Women's team won the tournament, and in 2009, their Men's team.

Kovsies will play in group matches against the Universities of Venda and Wits on 30 November 2015, against the University of Cape Town's (UCT's) second team on 1 December 2015, and against UCT's first team on 2 December 2015. The cross and knockout matches will be played on 3 and 4 December 2015.

Other sporting codes

The Sevens Rugby team from the UFS will compete in the USSA Tournament in George on 30 November and 1 December 2015.

For the past two years, the team has won bronze, and will be playing three league matches on 30 November 2015 against the North-West University's Vaal Campus, Nelson Mandela Metropolitan University's Port Elizabeth Campus, and the Vaal University of Technology.

Kovsies are the current Varsity Sevens Champions after winning the title in Cape Town in April 2015.

Ten Kovsie swimmers took part in the USSA Tournament in Johannesburg from 28 November to 30 November 2015. Last year, Kovsies came third, but unfortunately some of their leading swimmers were unable to take part this year.

The Kovsie Table tennis team will participate in the USSA Tournament in Kimberley from 30 November to 4 December 2015.

Most of the USSA Tournaments in the other sporting codes were either postponed or cancelled because of the recent nationwide student protests. As a result of the protests, exams were written later, and tournaments would have taken place during the holidays.

Only the tennis, table tennis, Sevens rugby, swimming, and cricket B Division in East London will continue.

The USSA Soccer Tournament, to take place at the UFS and the Central University of Technology in Bloemfontein, was postponed until March 2016.

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