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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

Bullying in schools: Everyone’s problem

2005-06-03

From left: Prof Gerhardt de Klerk, Dean: Faculty of the Humanities; Prof Corene de Wet; Prof Rita Niemann, Head of the Department of Comparative Education and Educational Management in the School of Education and Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS

It is not only learners who are the victums of bullying in schools, but also the teachers. Prof. Corene de Wet from the Department Comparative Education and Educational Management at the University of the Free State reported, against the background of two studies on bullying in Free State secondary schools, that bullying is a general phenomena in these schools.

Prof. de Wet, who delivered her inaugural lecture on Wednesday night, is from the Department Comparative Education and Educational Management which resorts under the School of Education at the University of the Free State. She is the first women who became a full professor the School of Education.

Prof. de Wet says, “A student is being bullied or victimized when he or she is exposed, repeatedly and over time, to negative action on the part of one or more students. Bullying always includes the intentional use of aggression, an unbalanced relationship of power between the bully and the victim, and the causing of physical pain and/or emotional misery.

In some Free State schools there are victims and perpetrators of direct and indirect verbal, as well as emotional, physical and sexual bullying.

“Adults who say that bullying are part of the growing-up process and parents who set not only academic expectations but also social expectations to their children cause that victims are unwilling to acknowledge that they are being bulled. Many parents are also unaware of the levels of bullying their children are exposed to.

“Some of the learners were at least once a month the victim of direct verbal harassment, 32,45% were assaulted by co-learners and 11,21% of them were at east once per week beat, kicked, pushed and hurt in any other physical way. Free State learners are very vulnerable to bullies at taxis and on the school yard they are mostly exposed to bullies in bathrooms.

“Learners are usually bullied by members of the same gender. However, racial composition also plays a role in some Free State schools. A grade 12 girl writes, ‘There are boys in my school who act means against black people. When the teacher is out they take a red pen and write on the projector and spray it with spirits. It looks like blood and they would say it is AIDS and my friends and I have it.’

“Educators must take note of bullying in schools and must not shrug it off as unimportant. Principals or educators could be find guilty of negligence. A large number of educator respondents, 88,29%, indicated that they would intervene in cases of verbal bullying and 89,71% would intervene if they saw learners being physically bullied. However, only 19,97% of the learners who were victims of bullying were helped by educators/ other adults from their respective schools.

“The learners’ lack of trust in their educators’ abilities and willingness to assist them in the fight against bullying has important implications for education institutions. The importance of training must be emphasised.

Learners bully their educators to undermine their confidence. In Prof. de Wet’s study on educator-targeted bullying in Free State schools 24,85% of the respondents were physically abused by their learners, 33,44% were the victims of indirect verbal bullying, and 18,1% were at one time or another sexually harassed by their learners. These learner offences may lead to suspension.

“Educators are not only victims of bullying; some of them are the bullies. The South African Council for Educators prohibits bullying by educators. It is worrying that 55,83% of the educators who participated in the research project verbally victimised learners, 50,31% physically assaulted learners and a small percentage was guilty of sexual harassment.

“Every educator and learner in South Africa has the right to life, equal protection and benefit of the law, of dignity, as well as of freedom and security of the person. These rights will only be realised in a bully-free school milieu.

“To oppose bullying a comprehensive anti-bullying programme, collective responsibility and the establishment of a caring culture at schools and in the community is necessary,” said Prof. de Wet.

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