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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

Inaugural lecture: Prof André Pelser

2004-06-04

Tendencies and changes in the South African population structure in future decades.

Within the next five years South Africa will for the first time in the past century enter a period where the death rate will exceed the birth rate, largely due to the impact of HIV / AIDS.

According to sociologist Prof André Pelser, sociologist at the of the University of the Free State’s (UFS) Department of Sociology, the death rate exceeding the birthrate is only one of three demographic trends which will fundamentally change South Africa’s population structure in the following decades.

He was speaking at the UFS in Bloemfontein during his inaugural lecture as professor this week.

Prof Pelser said that according to some models the South African population will decrease within the next five decades by between 10 and 26 percent.

A second important trend which will impact on the population structure is the progressive ageing of the population.

He said the group above 65 years is the only age category in the South African population which will witness sharp increases in the next few decades.

In the next 50 years, the group younger than 15 years will reflect a decrease of 39% and those older than 65 years in South Africa will increase by approximately 110% in the next two decades.

“The systematic “greying” of the South African population will create the same economic and welfare issues as those with which governments in some more developed countries are already grappling,” said Prof Pelser.

A third trend affecting the South African population structure is the constant decrease in life expectancy.

Life expectancy at birth for the total population is projected to decrease from approximately 62 years at the beginning of the 1990’s to 43 years in 2015-2020, with sharp differences between the various population groups.

These tendencies and changes to the South African population structure have serious implications, he said.

For example, he said, the reduction in life expectancy could compromise national development objectives.

“It is estimated that more than a quarter of the economically active population will be infected with HIV by 2006,” said Prof Pelser.

The increase in the population, in age category 65, will place a financial burden on government and the economically active sector.

“Especially worrying is the fact that ever-increasing proportions of the state budget will be allocated to health and welfare services and this at the expense of other priorities like education, infrastructure, criminal justice system and trade and industry, to name but a few,” he said

“A comprehensive and integrated strategy is thus vitally important in addressing the overarching issues caused by changes in the population structure,” said Prof Pelser.

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