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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

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. Annette Wilkinson
2008-04-16

A strong plea for a pursuit of “scholarship” in higher education

Prof. Annette Wilkinson of the Centre for Higher Education Studies and Development in the Faculty of the Humanities at the University of the Free State (UFS) made as strong plea for a pursuit of “scholarship” in higher education.

She said in her inaugural lecture that higher education has to deal with changes and demands that necessitate innovative approaches and creative thinking when it concerns effective teaching and learning in a challenging and demanding higher education environment. She referred to a recent research report prepared for the Council for Higher Education (CHE) which spells out the alarming situation regarding attrition rates and graduation output in South African higher education and emphasises factors leading to the situation. These factors include socio-economic conditions and shortcomings in the school and the subsequent under preparedness of a very large proportion of the current student population. However, what is regarded as one of the key factors within the sector’s control is the implementation of strategies for improving graduate output.

She said: “The CHE report expresses concern about academics’ adherence to traditional teaching practices at institutions, which have not changed significantly to make provision for the dramatic increase in diversity since the 1980s.

“Raising the profile of teaching and learning in terms of accountability, recognition and scholarship is essential for successful capacity-building,” she said. “The notion of scholarship, however, brings to the minds of many academics the burden of ‘publish or perish’. In many instances, the pressures to be research-active are draining the value put on teaching. Institutions demand that staff produce research outputs in order to qualify for any of the so-called three Rs – resources, rewards and recognition.

“These have been abundant for research, but scarce when it comes to teaching – with the status of the latter just not on the same level as that of research. From within their demanding teaching environments many lecturers just feel they do not have the time to spend on research because of heavy workloads, that their efforts are under-valued and that they have to strive on the basis of intrinsic rewards.”

She said: “It is an unfortunate situation that educational expertise, in particular on disciplinary level, is not valued, even though in most courses, as in the Programme in Higher Education Studies at the UFS, all applications, whether in assignments, projects or learning material design, are directly applied to the disciplinary context. We work in a challenging environment where the important task of preparing students for tomorrow requires advanced disciplinary together with pedagogical knowledge.”

Prof. Wilkinson argued that a pursuit of the scholarship of teaching and learning holds the potential of not only improving teaching and learning and consequently success rates of students, but also of raising the status of teaching and recognising the immense inputs of lecturers who excel in a very demanding environment. She emphasised that not all teaching staff will progress to the scholarship level or are interested in such an endeavour. She therefore suggested a model in which performance in the area of teaching and learning can be recognised, rewarded and equally valued on three distinct levels, namely the levels of excellence, expertise and scholarship. An important feature of the model is that staff in managerial, administrative and support posts can also be rewarded for their contributions on the different levels for all teaching related work.

Prof. Wilkinson also emphasised the responsibility or rather, accountability, of institutions as a whole, as well as individual staff members, in providing an environment and infrastructure where students can develop to their full potential. She said that in this environment the development of the proficiency of staff members towards the levels of excellence, expertise and scholarship must be regarded as a priority.

“If we want to improve students’ success rates the institution should not be satisfied with the involvement in professional development opportunities by a small minority, but should set it as a requirement for all teaching staff, in particular on entry into the profession and for promotion purposes. An innovative approach towards a system of continuous professional development, valued and sought after, should be considered and built into the institutional performance management system.”

As an example of what can be achieved, Prof. Wilkinson highlighted the work of one of the most successful student support programmes at the UFS, namely the Career Preparation Programme (CPP), implemented fourteen years ago, bringing opportunities to thousands of students without matric exemption. The programme is characterised by dedicated staff, a challenging resource-based approach and foundational courses addressing various forms of under preparedness. Since 1993 3 422 students gained entry into UFS degree programmes after successfully completing the CPP; since 1996 1 014 of these students obtained their degrees, 95 got their honours degrees, 18 their master’s degrees and six successfully completed their studies as medical doctors.

Prof. Wilkinson said: “I believe we have the structures and the potential to become a leading teaching-learning university and region, where excellence, expertise and scholarship are recognised, honoured and rewarded.”

 

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