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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

Twee broers lewer intreerede

2004-06-10

‘n Unieke geleentheid sal homself môre, 9 Junie 2004, voordoen wanneer twee broers - proff Francois en Janse Tolmie - tydens dieselfde geleentheid hul intreeredes aan die Universiteit van die Vrystaat (UV) sal lewer.

Prof Francois Tolmie is verbonde aan die UV se Departement Nuwe Testament en die onderwerp van sy lesing is Die impak van die metodologie op die verstaan van die Nuwe Testament. Prof Janse Tolmie, sy jonger broer, is verbonde aan die UV se Departement Rekenaarwetenskap en Informatika en die onderwerp van sy lesing is Die rol van inligtingstegnologie in kennisbestuur.

Hoewel die studievelde vér verwyderd staan, klop die twee broers se missies wat betref die terugploeg van die verworwe vakkennis ten bate van die gemeenskap. Prof Francois Tolmie is nóú betrokke by dowes en Prof Janse Tolmie tap weer kunsmatige intelligensie ten bate van die mediese wetenskap en geestesgesondheid.

Prof Francois Tolmie verwerf die grade BA, BA Honneurs (Grieks), MA (Grieks), B Th en M Th almal cum laude aan die UV. In 1992 verwerf hy 'n D Th (Nuwe Testament) en in 2004 'n Ph D (Grieks) aan dieselfde universiteit. Na sy militêre diens as kapelaan in Walvisbaai aanvaar hy 'n beroep na die NG-gemeente Walvisbaai. Hy begin sy akademiese loopbaan op 1 April 1990 as senior lektor in die Departement Nuwe Testament en word in 1999 tot medeprofessor en in 2003 tot professor bevorder.

Sy navorsingspesialiteit is die Johannesevangelie en die Brief aan die Galasiërs. Hy is tesourier van die Nuwe Testamentiese Werksgemeenskap van Suid-Afrika, lid van die Society of Biblical Literature en die Studiorum Novi Testamenti Societas, redakteur van Acta Theologica en assistent-redakteur van Neotestamentica. Hy het reeds 34 artikels in geakkrediteerde tydskrifte gepubliseer, asook drie populêr-wetenskaplike boeke en talle bydraes in populêr-wetenskaplike boeke. Hy het twee akademiese boeke in die buiteland gepubliseer - onderskeidelik in Nederland en in die VSA. Later vanjaar verskyn 'n derde akademiese boek in Duitsland. Hy is ook een van die vertalers van die Afrikaanse Bybel vir Dowes.

Prof Janse Tolmie verwerf die grade B Sc, B Sc (Hons) en M Sc (Cum Laude) in Rekenaarwetenskap aan die UV.

Hy is vanaf 1989 betrokke by die UV en was ook ’n dosent aan die Militêre Akademie in Saldanhabaai in 1990/91 en het klas gegee by DePaul Universiteit in Chicago in 2002.

In 1992 is hy vir ses maande gesekondeer na ’n patologiese firma, Van Drimmelen en Vennote, in Johannesburg vir die ontwikkeling van kennisgebaseerde sagteware. Met hierdie projek word hy een van slegs ’n handjievol navorsers in die wêreld wat daarin kon slaag om ’n mediese kundigheidstelsel te ontwikkel wat werklik gebruik word.

Hy verwerf sy Ph D in 1994 en in 1994/95 doen hy navorsing aan die Besigheidskool van Carleton Universiteit in Ottawa, Kanada. Hy word in 1997 bevorder tot mede-professor en in 2003 tot volprofessor. Vanaf 2003 tree hy op as departementele voorsitter van die UV se Departement Rekenaarwetenskap en Informatika.

Hy het meer as 30 publikasies al die lig laat sien, insluitend verskeie internasionale kongresbydraes en artikels in geakkrediteerde joernale. Hy was ook vir 2 siklusse geëvalueer by die NRF. Sy portfolio sluit in die ontwikkeling van sagteware of prototipes vir groot maatskappye soos Van Drimmelen en Vennote en Bayer Diagnostics (VSA). Sy privaatbesigheid fokus op die ontwikkeling van nismarksagteware vir tersiêre instellings. Die sagteware word tans gebruik deur afdelings aan verskeie universiteite in Suid-Afrika.

Die geleentheid vind om 19:00 in die CR Swart-ouditorium op die kampus plaas.

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Uitgereik deur: Lacea Loader
Mediaverteenwoordiger
Tel: (051) 401-2584
Sel: 083 645 2454
E-pos: loaderl.stg@mail.uovs.ac.za

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