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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

Shortage of quantity surveyors discussed at UFS

2006-03-24

During the recent visit of the Association of South African Quantity Surveyors (ASAQS) to the University of the Free State (UFS) were from the left Mr Egon Wortmann (Director: ASAQS), Prof Basie Verster (representative of the Free State on the ASAQS and head of the Department of Quantity Surveying and Construction Management at the UFS), Mr Greyling Venter (Chairperson: Free State branch of the ASAQS), Prof DG Brümmer(Vice-President: ASAQS) and Mr Patrick Waterson (President: ASAQS).
Photo supplied

Shortage of quantity surveyors discussed at UFS

“The South African building industry is experiencing an unprecedented high level of economic growth and prosperity. This is causing a definite shortage of registered quantity surveyors,” said Mr Egon Wortmann, Director of the Association of South African Quantity Surveyors(ASAQS) during the association’s recent visit to the Department of Quantity Surveying and Construction Management at the University of the Free State (UFS).

“This shortage is especially noticeable in local and national governments where unqualified and inexperienced staff, consultants and/or facilitators are now appointed,” said Mr Wortmann.

In doing so, the authorities that have adopted this approach are according to Mr Wortmann actually acting illegally and are not in compliance with the legal and statutory requirements of South Africa. “These unprofessional practices are unproductive, it leads to frustration and is strongly condemned by the ASAQS,” he said.

“The service delivery of these unqualified and unregistered service providers is often sub standard and does not comply to the legal requirements of the profession. It may also result in the tarnishing of the image and high professional standards set by the quantity surveying profession,” said Mr Wortmann.

“Universities offering programmes in quantity-surveying and construction management are also negatively affected by the high levels of activity in the building environment. Suitable lecturing staff are leaving the academic institutions as they are attracted to better opportunities being offered in the building industry. The ability of the tertiary institutions to attract young academics, to train them and to keep them in the longer term, is therefore almost impossible”, said Prof Basie Verster, head of the Department of Quantity Surveying and Construction Management at the UFS and representative of the Free State on the ASAQS.

According to Prof Verster the UFS supplies more than its quota of qualified quantity surveyors to the South African building industry. “Although more than 460 students are registered in construction related programmes at the UFS, we are as the ASAQS’s concerned about the shortage of students that can enter the construction industry. In our case, we are experiencing a shortage in black female students,” he said.

“Of the 460 postgraduate students, 38% are black of which 20% are female students. Graduates do also not necessarily stay in the country. As the UFS’s programmes are accredited overseas, a lot of our students leave the country for working opportunities elsewhere,” said Prof Verster.

Mr Patrick Waterson, President of the ASAQS, appealed to quantity surveyors to, when they are approached, consider academic careers or to make themselves available to lecture on a part time basis. “I also appeal to quantity-surveying practices, construction companies and developers to consider taking part in training activities,” he said.

The ASAQS has over the years developed a proud tradition within the quantity-surveying profession. Consequently membership of this organisation is a sought after goal for many members within the building environment. International agreements with various countries are also in place whereby it is mutually agreed that local as well as overseas qualifications are mutually acceptable on a reciprocal basis.

A more recent addition to the list of agreements is the reciprocity agreement entered into with the Royal Institution of Chartered Surveyors which makes it possible for South African based quantity surveyors to practice in over 120 countries worldwide.

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

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