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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 council elects Nwaila and Hancke

2005-03-15

Dr Charles Nwaila, Superintendent-General of Education in the Free State, was elected Vice-chairperson of the UFS Council and Judge Faan Hancke was re-elected as Chairperson today.

According to the Rector and Vice-Chancellor, Prof Frederick Fourie, the election of Dr Nwaila is an important achievement for the UFS as Dr Nwaila is a well known leader in education in the Free State.

Dr Nwaila pledged to work constructively with the UFS council and management to ensure that the UFS benefits all people of the province and the country.

The appointments are valid for a term of three years from 1 June 2005 to 31 May 2008.

The elections took place at the quarterly meeting of the UFS Council where a number of other key transformation steps were approved.

The Council approved a Strategic Plan for the UFS which reflects a renewed focus on transformation of the institution, calling it an important roadmap for the future of the UFS.

According to Prof Fourie, the Strategic Plan tried strike a balance between continuity and change, addressing the need to remain an excellent university in an ever-changing context and environment.

Prof Fourie said transformation had many aspects and dimensions and could not be reduced to an issue of numbers.

The Strategic Plan identifies five strategic priorities and corresponding challenges in the next phase of transformation.

The priorities are:

quality and excellence
equity, diversity and redress
financial sustainability
regional co-operation and engagement.
outward thrust

Prof Fourie said that besides the five strategic priorities the plan also reflected concrete actions and interventions to address them.

He said the renewed focus on transformation is embedded in the priorities and specific actions that are identified.

The Council congratulated the management for the roadmap and for the achievements that have already been achieved in terms of transformation.

In order to draft a comprehensive Transformation Plan that will give substance to certain aspects of the UFS Strategic plan – or roadmap – the Council approved the establishment of a Transformation Plan Team.

The team will consist of about 16 people, which includes the two coordinators, Prof Teuns Verschoor, Vice-Rector: Academic Operations, and Dr Ezekiel Moraka, Vice-Rector: Student Affairs.

According to Prof Verschoor, the team was chosen and approved by the Executive Management earlier for the individual contributions that they could make.

While the individuals do not represent particular constituencies on campus they are a very diverse group of persons in terms of race, gender and various sections of the campus and the satellite campuses.

Prof Fourie, said there was an urgency and importance attached to the work of the Transformation Plan Team.

He said that while the team must produce a plan within a tight deadline, the task must be carried out very well, which could mean different stages in the work of the team.

According to the Rector, the UFS must take the lead in best practice transformation, while not underestimating the complexity of the issues facing the UFS.

The full list of names will be finalized soon.

MEDIA RELEASE
Issued by: Mnr Anton Fisher
Director: Strategic Communication
Cel: 072 207 8334
Tel: (051) 401-2749
11 Maart 2005

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