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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 discontinues one Masters programme

2006-07-26

As from next year, the University of the Free State (UFS) will no longer offer one of its specialist master’s degrees in education – the M Ed in Education Management.

The other six M Ed programmes that are currently being offered at the UFS will continue as normal.

The decision to discontinue one of the M Ed programmes follows a national review of M Ed programmes in Educational Management and Leadership by the Higher Education Quality Committee (HEQC) of the Council on Higher Education (CHE).

Of the 23 tertiary institutions whose M Ed programmes in Educational Management and Leadership were reviewed by the HEQC, only 7 received full accreditation.

“The findings of the HEQC affect only one of our M Ed degree programmes, namely the M Ed in Educational Management,” said Prof Magda Fourie, Vice-Rector: Academic Planning at the UFS

“We will be paying full attention to the findings of the HEQC with a view to correcting some of the shortcomings that have been identified by the HEQC and will consider submitting a reviewed proposal for such a qualification in two years time,” she said.

According to Prof Fourie, the programme currently has 30 students enrolled. “These students – spread across their first and second years of the degree programme – will be allowed to complete their studies with the full support of the UFS and the School of Education,” said Prof Fourie.

“The qualification that has been awarded to students who have already completed their studies for this specific M Ed in Education Management degree programme remains a valid qualification and is not affected by the HEQC review,” said Prof Fourie.

She said the UFS welcomed the efforts of the HEQC to ensure that all academic programmes offered by higher education institutions meet certain standards.

“One of the primary problem areas in the M Ed in Educational Management offered by the UFS identified by the HEQC, was that the programme is too practice orientated and must be more theoretical to comply with the academic requirements of a master’s degree. This was a result of the fact that the programme was initially compiled in consultation with principals and the provincial Department of Education to address their needs,” said Prof Fourie.

“The UFS will in the mean time offer an advanced certificate in Educational Management and Leadership from next year. This is a new course that will stretch over a period of two years and will ensure that we can still address the needs of teachers and principals,” said Prof Fourie.

“The UFS remains committed to providing top quality degree programmes in all its six faculties and will continue to work with the HEQC in ensuring that this actually happens,” said Prof Fourie.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
25 July 2006

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