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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

Moshoeshoe's legacy lives on in university's project: City Press - 2 May 2004

2004-10-14

CITY PRESS 2 MAY 2004 P8

NEWS

JOHANNESBURG FINAL

Moshoeshoe's legacy lives on in university's project

MATEFU MOKOENA

DRUMS were beaten and the sounds of traditional songs reverberated through corridors of the University of the Free State (UFS) as Basotho students gathered at the campus over the weekend to launch a project honouring their late great king, Moshoeshoe.

The launch was organised by the Lesotho Students Association and UFS management and was blessed by King Letsie III of Lesotho.

According to UFS rector and vicechancellor, Professor Frederick Fourie, the aim of the project is to make the legacy of Moshoeshoe a living part of the university.

He said the Moshoeshoe project will include a television documentary on his life as well as an anthology of creative writings, including prose and poetry, about him.

A television documentary is already being filmed and will be screened during an international conference at UFS in October.

Fourie said the university, as part of the project, is looking at the possibility of starting an annual Moshoeshoe memorial lecture that will focus on African leadership, nationbuilding and reconciliation.

He said the university would introduce a PhD-level research course into the life and legacy of Moshoeshoe.

The university management has also taken a decision to erect a statue of Moshoeshoe on the campus.

Fourie said the project was launched after the UFS delegation, led by him, met Letsie III.

"He wanted us to ensure the legacy of Moshoeshoe is honoured and treated with the respect he deserves."

His legacy "must live on -- not only for the Basotho, but for all South Africans, black and white, and for the entire African continent", he said.

"Living out such a legacy is indeed a fitting contribution to the New Partnership for Africa's Development (Nepad) and to the maturing democracy that is being built here in South Africa," said Fourie.

He emphasised Moshoeshoe was and remains a model of African leadership.

Fourie said Moshoeshoe's diplomacy and commitment to peace put him on a par with former president Nelson Mandela as a statesman.

It is Fourie's dream that, through this project, the UFS will be able to give real meaning to words such as reconciliation, respect for the diversity of languages and cultures and the unity that is needed to build a democratic nation.

The Lesotho Students Association secretary, Sofonea Shale, said for an institution like the UFS to honour Moshoeshoe demonstrates that he was a great leader. "For Basotho students, the project is very significant as it clearly defines who we are and what we stand for.

"We believe the research into the legacy of our great king Moshoeshoe will open doors for more research into the life of Basotho in general.

"Africa as a whole can learn from his leadership style," he said.

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