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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

Help to rural women to become entrepreneurs

2006-10-24

Some of the guests who attended the ceremony were, from the left: Mr Donray Malabie (Head of the Alexander Forbes Community Trust), Ms Jemina Mokgosi (one of the ladies from Tabane Village who is participating in the Women in Agriculture project), Dr Limakatso Moorosi (Head: Veterinary Services, Free State Department of Agriculture), Prof Johan Greyling (Head: UFS Department of Animal and Wildlife and Grassland Sciences) and Ms Khoboso Lehloenya (coordinator of the project from UFS Department of Animal and Wildlife and Grassland Sciences). Photo: Leonie Bolleurs\

Alexander Forbes and UFS help rural women to become entrepreneurs

Today, the Alexander Forbes Community Trust and the University of the Free State (UFS) joined forces to create an enabling environment for rural women to become players in the private sector.

Three years ago the UFS set up a unique small-scale household egg production project called Women in Agriculture in Thaba ‘Nchu as a pilot project. The project was officially launched today by Mr Donray Malabie, Head of the Alexander Forbes Community Trust.

The aim of the Women in Agriculture Project is to create jobs, provide food security and to help develop rural women into entrepreneurs. A total of 25 women based in Tabane Village in Thaba ‘Nchu are the beneficiaries of the project.

“This is the first project in the Free State the Alexander Forbes Community Trust is involved with. The project would help rural women acquire the skills they need to run their own egg-production business from their homes,” said Mr Malabie.

“The ongoing debate on the shortage of skills ignores the fact that people with little or no education at all also need training. This project is special to the Trust as it provides for the creation of sustainable jobs, food security and the transfer of much needed skills all at once, particularly at this level,” he said.

Every woman in the group started with two small mobile cages that housed 12 hens each. The units are low in cost, and made of commercially available welded mesh and a metal frame. Now, each woman has four cages with 48 hens. The group manages to collectively produce 750 eggs daily.

The eggs are currently sold to local businesses, including spaza shops and the women are using the income generated to look after their families and to further develop their business.

The Department of Animal and Wildlife and Grassland Sciences at the UFS identified the project and did the initial research into the feasibility of setting up such a project.

“A demonstration and training unit has been established at the Lengau Agricultural Development Centre and the women attended a short practical training course. Subsidies are provided for feeding, together with all the material and the lay hens necessary for the start of the business,” said Ms Khoboso Lehloenya, coordinator of the project from the Department of Animal and Wildlife and Grassland Sciences at the UFS.

“The advantage in using lay hens is that they are resistant to diseases and the women will not need electric heating systems for the egg production,” said Ms Lehloenya.

According to Ms Lehloenya, the women are already benefiting from their egg production businesses. “Some of them have used the profit to buy school uniforms and tracksuits for their children and others are now able to make a monthly contribution to their household expenses,” said Ms Lehloenya.
“In South Africa, possibly due to cultural reasons and circumstances, most black people prefer to eat older and tougher chickens, compared to younger soft commercially available broiler chickens. This preference creates a further advantage for the women. At the end of their production cycle, old hens can be sold for a higher price than point-of-lay or young hens. This brings in further money to pay for more hens,” said Ms Lehloenya.

The Alexander Forbes Trust contributed R191 000 towards the project aimed at expanding it to benefit 15 more women.

“We are in the process of recruiting an additional 15 women in Thaba ‘Nchu who will be trained by the Lengau Agricultural Development Centre in order to replicate the model and extend its reach”, said Ms Lehloenya.

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

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