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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 awards honorary doctorates during its centenary week

2004-10-07

The University of the Free State (UFS) will award 12 honorary doctorates on Thursday 14 October 2004 to a diverse group of outstanding South Africans and international experts.

This will be the last in a group of 18 honorary doctorates that the UFS will be awarding in its centenary year.

The awards comprise of a number of well-known language experts and writers, experts in higher education, first-time awards in community service and development studies, as well as music.

“This reflects quality and also diversity, a spectrum of convictions as well as the recognition of persons who played a major role in changing society in the last couple of decades, “ says Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS.

The awards can be grouped in the following categories:

Language and literature:

Mr Karel Schoeman (D Litt (hc)) – well-known Afrikaans author and former student of the UFS. Some of the awards he has received include the Hertzog prize for prose (1970, 1986 and 1995), the CNA prize (1972 and 1994), the Old Mutual prize (1985 and 1991), the SABC prize for best television drama in 1990, the M Net book prize in 1997 and the State President award (former President Nelson Mandela: Order for Excellent Service – silver) in 1999. It is an honor for the UFS to have this gifted and creative person among its former students. This conferment is a fitting recognition of his status as leading South African writer.

Ms Antjie Krog (D Litt (hc)) – well-known South African poet and former student of the UFS. Her popularity as poet is evident in her piercing honesty and unequalled power of expression. Some of the awards she has received include the Eugéne Marais prize in 1973, the Rapport prize in 1987, the Hertzog prize in 1990 and the RAU prize in 2000. Her writing has been translated into seven languages. She has also received numerous honors for her involvement in and journalistic documentation of the Truth and Reconciliation Commission’s (TRC) proceedings. It is therefore an exceptional privilege for her alma mater to honor her with an honorary doctorate.

Prof Jaap Steyn (D Litt (et phil) (hc)) – recently, Prof Steyn again distinguished himself as biographer whose thorough research is apparent in the published biographies of illustrious writers such as NP van Wyk Louw and MER. The numerous awards, among which the Stals prize from the South African Academy of Science and Art for the Van Wyk publication, are a matter of record. He conducted the research for this great prize-winning work as honorary professor at the UFS.

Prof Jakes Gerwel (D Phil (hc)) – Chancellor of the University of Rhodes and Director of Naspers, Old Mutual, Gold Fields and Brimstone. His doctoral thesis was published in The Netherlands under the title Literatuur en apartheid. Konsepsies van “gekleurdes” in die Afrikaanse roman tot 1948 (1983). He received an honorary doctorate from Clark College ( Atlanta), the City University of New York and Missouri in the USA, the University of the Western Cape, the University of Cape Town, the University of Natal, Rhodes University, the University of Stellenbosch and the University of the Witwatersrand. He is also outstanding professor in the Humanities at the University of the Western Cape, honorary professor in the Humanities at the University of Pretoria, and was the chairman of the Human Sciences Research Council (HSRC).

Development Studies:

Dr Frederick van Zyl Slabbert (D Phil (hc)) – for his academic achievements, his endeavors for bringing about a peaceful transition in South Africa and his demonstration of the social investment role of the corporate sector. Dr Van Zyl Slabbert has received honorary degrees from the University of Natal and the Simon Fraser University in Canada. He has published seven books and various academic articles.

Community Service:

Prof Robert G Bringle (D Phil (hc)) – from the Indiana University-Purdue University Indianapolis (IUPUI) in the USA. He is currently Chancellor’s Professor of Psychology and Philanthropic Studies at the IUPUI and also Director of the IUPUI’s Centre for Service Learning. He is honored for his exceptional contribution to several of the UFS’s community service projects as well as his role in the advancement of a multi- and inter-disciplinary approach to academic development and the integration of service learning within the faculties of the UFS. He has also made a valuable contribution to the conceptual framework of the UFS’s unique community service policy and more recently to the advancement of a research culture regarding community service.

Higher education:

Dr Khotso Mokhele (D Phil (hc)), President of the National Research Foundation (NRF) is honored for his contribution to the South African higher education sector. He has also made a substantial contribution to the development of the research capacity of universities and technikons in South Africa. Dr Mokhele was born in Bloemfontein and matriculated at the Moroka High School in Thaba Nchu.

Prof Saleem Badat (D Phil (hc)), the Chief Executive Officer of the Council on Higher Education (CHE). Prof Badat has devoted himself to transforming and building South African higher education, and has constantly challenged the higher education sector to retain the moral basis of higher education and tackle its challenges with intellectual honesty, ingenuity, creativity and courage. He is honored for his intellectual leadership in the development of a equitable, just and quality higher education system in South Africa.

Law:

Prof HA (Boelie) Wessels (D Legum (hc)) – for his contribution to the fields of Roman Law, Legal History at the UFS. He is currently a part-time lecturer at the UFS’s Faculty of Law.

Medicine:

Prof CJC Nel (D Phil (hc) Posthumous) – for the way in which he strived for the advancement of excellent medical education in the country. Prof Nel also did pioneering work in the field of transformation in higher education. Under his guidance the School of Medicine at the UFS became one of the first medical schools to adopt a parallel-medium system of instruction.

Music:

Prof Leo Quayle (D Mus (hc)) – for the significant contributions he has made to the development of music – not only in Bloemfontein, but also on national level and abroad. His initiative, enthusiasm and dedication contributed to the eventual founding of the Free State Musicon, as well as the first symphony orchestra and the first string quartet in Bloemfontein. Prof Quayle is a former head of the Department of Music at the UFS.

Prof Jack de Wet (D Mus (hc)) – well-known for his exceptional contribution to violin tuition in South Africa. As pedagogue of international stature, he still moulds violinists who compete at national and international level. At an advanced stage of his career, he still actively conveys his knowledge, experience and distinctive insight in his field of speciality to yet another new generation of young violin teachers. Today the symphony orchestras in Bloemfontein and Port Elizabeth also stand on the foundations laid by him.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
7 October 2004

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