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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 plans to improve undergraduate pass rate

2005-01-13

The University of the Free State (UFS) will introduce a new foundation programme this year 2005 in an effort to improve the academic performance of undergraduate students.

According to Mr Francois Marais, Head: Centre for Higher Education Studies and Development (CHESD) at the UFS, the programme will assist students by providing for the development of cognitive and critical thinking skills by means of the integration of appropriate thinking skills (such as creative thinking, decision-making, problem solving, reasoning, and how to learn), into the subject content of university courses.

“The foundation programme will benefit students from disadvantaged school backgrounds and, in future, those whose performance in proficiency tests points to the need for additional development in, for example, language proficiency, mathematical literacy, computer skills and life skills,” says Mr Marais.

Based on their level of achievement in the final Grade 12 examination (Senior Certificate), students will be referred to the foundation programme.

In order to improve students writing and reading abilities for higher education studies, foundation programme students will be offered academic language courses in English and Afrikaans.

Kovsie Counselling will render appropriate services, eg career guidance and support to these students.

The new foundation programme will be implemented in the faculties of Natural and Agricultural Sciences, Economic and Management Science, the Humanities and Law.

The duration for this programme differs from faculty to faculty. In the Faculty of Law it will take five years, while in the faculties of the Humanities, Natural and Agricultural Sciences, and Economic and Management Sciences it will take four years.

The national Department of Education will fund the foundation programme for three years. Funding for such programmes was made available to all higher education institutions in South Africa.

The welcoming function for all new first-year students and their parents will take place on Saturday 15 January 2005 at 11:00 in the Callie Human Centre on the main campus in Bloemfontein.

The registration of first-time entering first-year students who applied before 30 November 2004 to study at the Bloemfontein campus will take place from Monday 17 January 2005 to 21 January 2005 at the Callie Human Centre.

Senior undergraduate students (that is, students entering their second or later year of study) may register from 22 to 29 January 2005.

Postgraduate students, first time entering first year students and other students who applied for admission to the main campus after 30 November 2004 must register at the Callie Human from 31 January 2005 to 4 February 2005.

Due to the limitations placed by government on student numbers, the applications of students who applied late will be regarded as pending and will be processed as places become available.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
13 January 2005

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