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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

Multidisciplinary conference on TB control

2003-09-22

Theme: Tuberculosis control: a multidisciplinary approach to research, policy and practice Venue: CR Swart Auditorium, University of the Free State Campus, Bloemfontein Date: 11 and 12 November 2003 Time: 11 November, 19:00-20:30 AND 12 November 08:30-17:00

Tuesday, 11 November - 19:00-20:30 (registration from 18:30) and Wednesday, 12 November - 08:30-17:00 (registration from 07:30)

The Honourable MEC for Health in the Free State will officially open the Conference on the evening of 11 November, while Prof Frederick Fourie (Vice-Chancellor and Rector of the University of the Free State) will attend to the welcoming. In addition, Prof Françoise Portaels (Institute of Tropical Medicine, Belgium) and Dr Refiloe Matji (National Department of Health, South Africa) will respectively present a global and a South African perspective on TB. The majority of the presentations will follow on 12 November.

Main thrust of Conference

The main thrust of the Conference is to disseminate both research results and policy/managerial matters relevant to TB and TB control, and to facilitate discourse among researchers and health policy makers/managers/practitioners in the field of TB control. Presenters of papers, as well as delegates are, therefore, drawn from both academic/research institutions, and from health service sectors involved in TB control in all provinces and in neighbouring countries.

Topics of presentations

A variety of topics will be dealt with during presentations, such as: New challenges in the global control of MDR-TB New strategies and policies on MDR-TB in South Africa A South African perspective on TB control A provincial perspective on implementing the national TB control policy

The role of the public district hospital in TB control Tuberculosis control through DOTS Case detection strategies

TB in children Hospital to clinic: is this the missing link? Patient compliance with DOT for TB Challenges for effective health communications in a multicultural context

The economics of TB Frequency of multiple infections with M. tuberculosis in pulmonary TB patients HIV/AIDS and TB, etc.

Speakers

Among the speakers will be Dr Victor Litlhakanyane (Head of Health: Free State); Prof Françoise Portaels and Dr Leen Rigouts (Institute of Tropical Medicine, Belgium); Dr Reliloe Matji (Director: NTBC Programme); Ntsiki Jolingana (Director: HIV, AIDS, TB and Communicable Diseases, Free State) and Annatjie Peters (Free State TB Coordinator); Dr Karin Weyer (Medical Research Council); Profs Herman Meulemans, Diana De Graeve, Luc Pauwels and Christiane Timmerman (University of Anwerp, Belgium); Dr Lara Fairall (UCT Lung Institute, University of Cape Town); Prof Frikkie Booysen (Department of Economics, University of the Free State); Christo Heunis, Ega Janse van Rensburg-Bonthuyzen, Zacheus Matebesi and Kobus Meyer (CHSR&D); Dr Mary Ednington (School of Public Health, Wits); Dr Carmen Báez and Sabine Verkuijl (ISDS); Anneke Van der Spoel-Van Dijk (Medical Microbiology, University of the Free State).

Costs

There will be no registration fees. However, delegates are expected to arrange their own transport and accommodation, or arrange for sponsorships themselves.

Contact details in case of inquiries and confirmation:

Postal Address: The Director, CHSR&D, PO Box 339, University of the Free State, Bloemfontein, 9300 Fax: 051 448 0370 Tel: 051 401 2181 OR 051 401 3256 E-mail: vrensh@mail.ufs.ac.za (Dingie van Rensburg) OR neljc@mail.ufs.ac.za (Ohna Nel)

PLEASE, CONFIRM YOUR ATTENDANCE AS SOON AS POSSIBLE, BUT AT THE LATEST BEFORE 25 OCTOBER 2003 ? BY TELEPHONE, FAX OR E-MAIL.

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