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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 research sheds light on service delivery protests in South Africa

2015-01-23

UFS research sheds light on service delivery protests in South Africa

Service delivery protests in the country have peaked during 2014, with 176 major service delivery protests staged against local government across South Africa.

A study by the University of the Free State (UFS) found that many of these protests are led by individuals who previously held key positions within the ANC and prominent community leaders. Many of these protests involved violence, and the destruction had a devastating impact on the communities involved.

This study was done by Dr Sethulego Matebesi, researcher and senior lecturer at the UFS. He focused his research on the dynamics of service delivery protests in South Africa.

Service delivery protests refer to the collective taken by a group of community members which are directed against a local municipality over poor or inadequate provision of basic services, and a wider spectrum of concerns including, for example, housing, infrastructural developments, and corruption.

These protests increased substantially from about 10 in 2004 to 111 in 2010, reaching unprecedented levels with 176 during 2014.

The causes of these protests are divided into three broad categories: systemic (maladministration, fraud, nepotism and corruption); structural (healthcare, poverty, unemployment and land issues); and governance (limited opportunities for civic participation, lack of accountability, weak leadership and the erosion of public confidence in leadership).

In his research, Dr Matebesi observed and studied protests in the Free State, Northern Cape and the North-West since 2008. He found that these protests can be divided into two groups, each with its own characteristics.

“On the one side you have highly fragmented residents’ groups that often use intimidation and violence in predominantly black communities. On the other side, there are highly structured ratepayers’ associations that primarily uses the withholding of municipal rates and taxes in predominantly white communities.”

Who are the typical protesters?

Dr Matebesi’s study results show that in most instances, protests in black areas are led by individuals who previously held key positions within the ANC - prominent community leaders. Generally, though, protests are supported by predominantly unemployed, young residents.

“However, judging by election results immediately after protests, the study revealed that the ANC is not losing votes over such actions.”

The study found that in the case of the structured ratepayers’ associations, the groups are led by different segments of the community, including professionals such as attorneys, accountants and even former municipal managers.

Dr Matebesi says that although many protests in black communities often turned out violent, protest leaders stated that they never planned to embark on violent protests.

“They claimed that is was often attitude (towards the protesters), reaction of the police and the lack of government’s interest in their grievances that sparked violence.”

Totally different to this is the form of peaceful protests that involves sanctioning. This requires restraint and coordination, which only a highly structured group can provide.

“The study demonstrates that the effects of service delivery protests have been tangible and visible in South Africa, with almost daily reports of violent confrontations with police, extensive damage to property, looting of businesses, and at times, the injuring or even killing of civilians. With the increase of violence, the space for building trust between the state and civil society is decreasing.”

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