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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 releases draft charter to accelerate transformation

2007-02-02

The University of the Free State (UFS) today released a draft Institutional Charter which is intended to enhance and accelerate the ongoing transformation of the institution towards a non-racial, non-sexist future.

Speaking at the official opening of the university today, the Rector and Vice-chancellor, Prof Frederick Fourie, said the draft Institutional Charter, was an important milestone in the transformation debate for the university and the country.

“The draft charter acknowledges that black people, women and people with disabilities have been marginalised from job and developmental opportunities, within the higher education sector and at this university,” Prof Fourie said.

The charter commits the university to meeting the challenges of a transforming higher education institution in a developing society, in particular the challenges of nation-building, reconciliation, redress, non-racialism and non-sexism – and ultimately normalisation – within a high-quality academic institution.

The principles of the draft charter firmly signal the university’s commitment to diversity – attaining and maintaining substantive and sufficient diversity (including multiculturalism and multilingualism) – in its quest for quality and excellence.
Prof Fourie said the draft charter seeks to build consensus among staff and students at the UFS about the ultimate goals of transformation at a higher education institution.

The charter proposes several basic values and principles that should guide the transformation process and at the same time serve as a basis for a future, normalised university - a promised land to transform towards.

The discussion document says academic quality is intrinsically linked to transformation and it commits the university to strengthening the core competencies of research, teaching and learning as well as community service so as to ensure a robust university for future generations.

“Indeed the thousands of matriculants, black and white, who apply to study at the UFS want to study at a good university, and a good university wants to attract the best black and white students and the best black and white staff, male and female,“ Prof Fourie said.

He said the draft charter also seeks to safeguard academic freedom and institutional autonomy as the foundation of critical inquiry and scholarship.

Regarding the critical issue of creating a new institutional culture, the draft charter commits the UFS to creating a sense of belonging for all members of the university – black and white, male and female, of whatever language, religious, cultural or economic background, as well as people with disabilities.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl@mail.uovs.ac.za
02 February 2007

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