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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

Graduates encouraged to use their knowledge to the benefit of SA

2017-06-28

Description: Graduation read more photo 27 June 2017 Tags: Graduation read more photo 27 June 2017

On 26 June 2017, the last day of its mid-year graduation
ceremonies, the University of the Free State conferred
388 master’s and 72 doctoral degrees.
Photo: Charl Devenish

You have the knowledge, which is a big resource, and should use it to the benefit of South Africa. This was the overwhelming message to graduates obtaining their master’s and doctoral degrees at the University of the Free State (UFS).

Their responsibility was emphasised by the likes of Justice Mahube Molemela during the ceremonies in the Callie Human Centre at the Bloemfontein Campus on 26 June 2017. Justice Molemela, Judge President of the Free State Division of the High Court and Acting Justice of the Supreme Court of South Africa, was the guest speaker at the morning and afternoon ceremonies.

The UFS conferred 388 master’s and 72 doctoral degrees on the final day of its mid-year graduation ceremonies, which was the biggest set of ceremonies in the university’s history. The doctorates came from the Faculty of Natural and Agricultural Sciences (30), Faculty of the Humanities (15), Faculty of Economic and Management Sciences (9), Faculty of Education (8), Faculty of Health Sciences (5), and Faculty of Theology (5). A total of 5 258 degrees were conferred over six days from 19 to 26 June 2017.

Future dependant on youth
Justice Molemela said the master’s and doctoral graduates have the skills to make a difference. “The future of a nation is largely dependent on its youth playing a meaningful role in creating a strong economy, culminating in a good standard of living for everyone.”

She said they should plough back into their communities and give opportunities to others. “I am certain that if each one of you thinks innovatively in your respective fields, you will find solutions which will eradicate poverty, improve service delivery, and hence our education will advance gender equity, and promote public participation.”

Dr Khotso Mokhele, UFS Chancellor, said these graduates have every reason to hold their heads high, their shoulders square, and walk with a bit of an attitude, as they have distinguished themselves.

Generation of new knowledge
According to Prof Francis Petersen, Rector and Vice-Chancellor, the UFS strives to be a university that is research led. “For me, one of the important aspects about universities which set them apart from other training and vocational institutions is the generation of new knowledge,” he said at a lunch function for PhD graduates on 26 June 2017. He feels it is critically important for them to make a contribution to the country.

Dipiloane Phutsisi, Principal and Chief Executive Officer of the Motheo TVET College in the Free State, also emphasised this. Phutsisi was the guest speaker on 23 June 2017. “Your courage and eagerness to face the future and tell the truth in the midst of this confusion, is highly desired by South Africans.”

Justice Ian van der Merwe, Judge of Appeal at the Supreme Court of Appeal and former Chair of the UFS Council, was the guest speaker at the ceremonies on 22 June 2017. He encouraged graduates from a chapter in the book War and Peace by Leo Tolstoy.

“There is no greatness where there is not simplicity, goodness, and truth (according to Tolstoy). Or maybe more modernly translated: There is no greatness where simplicity, goodness, and truth are absent.”

Click here to see a list of Deans’ and Senate medals awarded.

Graduations ceremonies:

19 June 2017:

Faculty of Education, except educational qualifications in Open and Distance Learning – South Campus
Faculty of Health Sciences, Faculty of Theology, and Faculty of Law (including the School of Financial Planning Law)

“Every one of us, is destined for greatness. In the words of Dr Martin Luther King: Everyone has the power for greatness, not for fame but greatness, because greatness is determined by service.” – Dipiloane Phutsisi (Guest speaker and Principal and Chief Executive Officer of the Motheo TVET College in the Free State)

Photo Gallery
Livestream Footage (morning session)
Livestream Footage (afternoon session)

Photo: Charl Devenish

20 June 2017:

Faculty of Natural and Agricultural Sciences: All Bachelor’s degrees
Faculty of Natural and Agricultural Sciences: All Diplomas and Bachelor Honours degrees

“Graduation marks a start of a new and wonderful journey. During the last couple of years you have not only developed your intellect, but also expanded what I call your social self,” - Prof Francis Petersen, Rector and Vice-Chancellor

Speech: Prof Francis Petersen (morning)
Speech: Prof Francis Petersen (afternoon)
Photo Gallery
Livestream Footage (morning session)
Livestream Footage (afternoon session)

Photo: Charl Devenish

21 June 2017:

Faculty of Economic and Management Sciences: All certificates, diplomas, Bachelor’s degrees, and Bachelor Honours degrees, excluding BCom degrees
Faculty of the Humanities: Social Sciences and Communication Sciences only

“Graduation is one of the most accomplished achievements one can ever experience.” – Justice Connie Mocumie (Guest speaker and Judge of Appeal at the Supreme Court of Appeal)

Photo Gallery
Livestream Footage (morning session)
Livestream Footage (afternoon session)

Photo: Charl Devenish

22 June 2017:

Faculty of Economic and Management Sciences: BCom degrees only
Faculty of the Humanities: All qualifications, except Social Sciences and Communication Sciences

“The question is not if you will make mistakes, but how do you deal with your mistakes? Do you admit them, do you learn from them, and do you grow as a person?” – Justice Ian van der Merwe (Guest speaker and Judge of Appeal at the Supreme Court of Appeal)

Photo Gallery
Livestream Footage (morning session)
Livestream Footage (afternoon session)

Photo: Johan Roux

23 June 2017:

Educational qualifications in Open and Distance Learning – South Campus

“Class of 2017, go and make your own unique contributions but remember to look into your own heart. South Africa needs your skills, your innovation, knowledge, your expertise and creativity.” – Dipiloane Phutsisi (Guest speaker and Principal and Chief Executive Officer of the Motheo TVET College in the Free State)

Photo Gallery
Livestream Footage (afternoon session)

Photo: Charl Devenish

26 June 2017:

All faculties: master’s and doctoral degrees

“Class of 2016/2017 graduates: You are critical thinkers, you can analyze, you can think independently. That is why you managed to successfully complete postgraduate degrees and diplomas.” – Justice Mahube Molemela (Judge President of the Free State Division of the High Court and Acting Justice of the Supreme Court of South Africa)

Photo Gallery
Livestream Footage (morning session)
Livestream Footage (afternoon session)

Photo: Charl Devenish

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