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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

Council votes on appointment of senior staff

2004-11-18

The Council of the University of the Free State (UFS) today voted on the filling of three senior vacancies, including one post at Dean level and two at the level of Vice-Dean.

The Council voted as follows:


Dr Natie Luyt will be offered the post of Dean: Student Affairs	Prof Engela Pretorius will be offered the post of Vice-Dean: Faculty of Humanities	Dr Choice Makhetha will be offered the post of Vice-Dean: Student Affairs

“There are special challenges for the UFS in the short and medium term regarding transformation of our residences, and a certain combination of management qualities and skills is desirable. As a result of the diversity of the UFS’s student community it is therefore important to us to follow a team approach to deal with the challenges. With the combination of Drs Luyt and Makhetha, I believe we will be able to manage student affairs effectively and skillfully,” says Prof Frederick Fourie, Rector and Vice-Chancellor of the UFS.

“It is wonderful that we are able to celebrate the outcome of this process that has brought forward such excellent candidates who reflect our country’s diversity. It shows that we can achieve the goals of quality and diversity at the same time,” says Prof Fourie.

Prof Pretorius obtained all her qualifications (BA, BA (Hons) (cum laude), MA (cum laude) and D Phil) from the UFS, except for the Certificate in Gender Policy Management (cum laude) which she obtained in 2000 from WITS. She joined the Department of Sociology at UFS in 1980 and has headed the Department since 2001. She acted as Vice-Dean: Faculty of Humanities since July 2004. She has some thirty publications to her credit, published both nationally and internationally and has delivered 20 national and international papers. She is a member of the South African Sociological Association and is a member of the Council of the association and of the Editorial Board of Society in Transition, the society’s journal. She is also a member of the South African Academy for Science and Art and the Federation of African Women Educationalists in South Africa (FAWESA). Project involvement includes the Australian Women’s Executive Development Programme and the project Executive Development of Senior Women in South African Higher Education Institutions. She is also an NRF panelist.

Dr Luyt obtained his qualifications (BA, BA (Hons) (cum laude), MA (cum laude) and D Phil) at the UFS and started his career at the same institution in 1980 as lecturer in Political Science. He was promoted to senior lecturer in 1983 and appointed as Director: Student Affairs in 1997. He has been acting as Dean: Student Affairs since 2003. Dr Luyt completed several work-related training courses, among others a course in ethnic and multiculturality at the Swiss Institute for Federalism and a course in conflict management at the South Tyrolean Economic and Social Institute.

Dr Makheta also obtained all her qualifications (BA, BA (Hons), MA in Political Science and Ph D in Political Science) at the UFS and started working as a student assistant in Political Science at the same institution in 1999. She was promoted to junior assistant in 2000, coordinator and facilitator of Political Science in 2001, assistant/acting Director: Student Affairs in 2001 and acting Director: Student Affairs in 2003. Dr Makhetha is currently a Senior Political Analyst at the Department of Foreign Affairs.

The UFS Council also approved the promotion of nine professors to the rank of senior professor. They are Proff Louise Cilliers (Department English and Classical Languages), Dap Louw (Department of Psychology), Philip Nel (Department Afro-Asiatic Studies, Sign Language and Language Practice), Dirk van den Berg (Department of History of Art and Visual Culture Studies) Dingie van Rensburg (Director: Centre for Health Systems Research and Develoment), Andries Raath (Department of Constitutional Law and Philosophy of Law), James du Preez (Department of Microbial, Biochemical and Food Biotechnology), Johan Grobbelaar (Department of Plant Sciences) and Louis Scott (Department of Plant Sciences).

This is the first group ever of senior professors at the UFS. The post level was created to provide better career and earnings opportunities for high quality academics and to increase the attractiveness of an academic career to young people.

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

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