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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

Gender bias still rife in African Universities
2007-08-03

 

 At the lecture were, from the left: Prof. Magda Fourie (Vice-Rector: Academic Planning), Prof. Amina Mama (Chair: Gender Studies, University of Cape Town), Prof. Engela Pretorius (Vice-Dean: Humanties) and Prof. Letticia Moja (Dean: Faculty of Health Sciences).
Photo: Stephen Collett

Gender bias still rife in African Universities

Women constitute about 30% of student enrolment in African universities, and only about 6% of African professors are women. This is according to the chairperson of Gender Studies at the University of Cape Town, Prof Amina Mama.

Prof Mama was delivering a lecture on the topic “Rethinking African Universities” as part of Women’s Day celebrations at the University of the Free State (UFS) today.

She says the gender profile suggests that the majority of the women who work in African universities are not academics and researchers, but rather the providers of secretarial, cleaning, catering, student welfare and other administrative and support services.

She said that African universities continue to display profound gender bias in their students and staffing profiles and, more significantly, are deeply inequitable in their institutional and intellectual cultures. She said women find it difficult to succeed at universities as they are imbued with patriarchal values and assumptions that affect all aspects of life and learning.

She said that even though African universities have never excluded women, enrolling them presents only the first hurdle in a much longer process.

“The research evidence suggests that once women have found their way into the universities, then gender differentiations continue to arise and to affect the experience and performance of women students in numerous ways. Even within single institutions disparities manifest across the levels of the hierarchy, within and across faculties and disciplines, within and between academic and administrative roles, across generations, and vary with class and social background, marital status, parental status, and probably many more factors besides these”, she said.

She lamented the fact that there is no field of study free of gender inequalities, particularly at postgraduate levels and in the higher ranks of academics. “Although more women study the arts, social sciences and humanities, few make it to professor and their research and creative output remains less”, she said.

Prof Mama said gender gaps as far as employment of women within African universities is concerned are generally wider than in student enrolment. She said although many women are employed in junior administrative and support capacities, there continues to be gross under-representation of women among senior administrative and academic staff. She said this disparity becomes more pronounced as one moves up the ranks.

“South African universities are ahead, but they are not as radically different as their policy rhetoric might suggest. A decade and a half after the end of apartheid only three of the 23 vice-chancellors in the country are women, and women fill fewer than 30% of the senior positions (Deans, Executive Directors and Deputy Vice-Chancellors)”, she said.

She made an observation that highly qualified women accept administrative positions as opposed to academic work, thus ensuring that men continue to dominate the ranks of those defined as ‘great thinkers’ or ‘accomplished researchers’.

“Perhaps women simply make realistic career choices, opting out of academic competition with male colleagues who they can easily perceive to be systematically advantaged, not only within the institution, but also on the personal and domestic fronts, which still see most African women holding the baby, literally and figuratively”, she said

She also touched on sexual harassment and abuse which she said appears to be a commonplace on African campuses. “In contexts where sexual transactions are a pervasive feature of academic life, women who do succeed are unlikely to be perceived as having done so on the basis of merit or hard work, and may be treated with derision and disbelief”, she said.

She, however, said in spite of broader patterns of gender and class inequality in universities, public higher education remains a main route to career advancement and mobility for women in Africa.

“Women’s constrained access has therefore posed a constraint to their pursuit of more equitable and just modes of political, economic and social development, not to mention freedom from direct oppression”, she said.

Prof Mama concluded by saying, “There is a widely held agreement that there is a need to rethink our universities and to ensure that they are transformed into institutions more compatible with the democratic and social justice agendas that are now leading Africa beyond the legacies of dictatorship, conflict and economic crisis, beyond the deep social divisions and inequalities that have characterised our history”.

She said rethinking universities means asking deeper questions about gender relations within them, and taking concerted and effective action to transform these privileged bastions of higher learning so that they can fulfil their pubic mandate and promise instead of lagging behind our steadily improving laws and policies.

Media Release
Issued by: Mangaliso Radebe
Assistant Director: Media Liaison
Tel: 051 401 2828
Cell: 078 460 3320
E-mail: radebemt.stg@ufs.ac.za  
02 August 2007
 

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