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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 awards centenary bonuses to staff

2004-11-25

The University of the Free State (UFS) will award a special Centenary bonus of R3000 (three thousand rand) to all qualifying staff in December 2004 .

As far as general salary increases for 2005 are concerned, plus an inflation- based linked salary increase adjustment of 1,4 percent and a further 4,6 percent salary increase as a final dividend from the financial turn-around strategy that began in 2000, will be instituted .

The final percentage salary increase is dependent on whether the expected government subsidy, of which the UFS must still receive notification from the Department of Education, is received.
, if the expected government subsidy realizes .
In addition, the salaries of service workers in low remuneration groups, as well as full professors have been adjusted retroactively to 1 January 2004. This restructuring was agreed upon to address market-related backlogs for these two groups , who display the biggest backlog relative to comparable institutions . A similar professional bench-marking exercise for support service staff has not been finalised.

This agreement was signed on Wednesday 24 November 2004 between the UFS Council and the UVPERSU-NEHAWU Joint Forum regarding salary negotiations for 2005.

“With this Centenary bonus and the significant above-inflation salary increase payment the UFS wants to pay recogni se tion to the sterling role that staff

have played in a difficult period of transition and fast growth and the contributions that they made to promote excellence at the UFS to a

university of excellence,” said Prof Frederick Fourie, Rector and Vice-

Chancellor of the UFS.

He said that the extra payment of this final 4,6 percent increase due to benefit from the financial turn-around strategy means that in real terms average salaries at the UFS had increased over the past 3 to 4 years by well over more that the 15 percent target that was set initially.

According to Prof Fourie all staff members who were in the employ of the UFS on UFS conditions of service on 15 November 2004 and who assumed duties before 1 October 2004, will qualify for the bonus. The same criteria will apply as for the 2004 bonuses.

However, there are some exceptions who do not qualify for the bonus eg learning facilitators, professors extraordinary, affiliated lecturers, departmental assistants, laboratory assistants, student help, all staff appointed for less than 20 hours per week, persons who are paid on a claims basis etc.

“Although the UFS’s actual subsidy amount is not yet known, an increase of 6,6 % in the total remuneration costs was budgeted for in the budget serving before the Executive Management and Council. It was further agreed with the UVPERSU-NEHAWU Joint Forum that the first 6 % increase will be used as general pensionable salary adjustment with implementation date 1 January 2005,” said Prof Fourie.

According to Prof Fourie the agreement also applies to all staff members of the Qwaqwa and Vista campuses whose conditions of service are already aligned with those of the main campus.

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 November 2004

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