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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

UV vestig hom afgelope eeu as leier op verskeie terreine

2004-05-11

Michelle O'Connor - Volksblad - 11 Mei 2004

Ondank terugslae nou 'n 'gesonde volwassene'

HOEWEL die Universiteit van die Vrystaat (UV) vanjaar sy eeufees vier en met 23 000 studente die grootste universiteit in die sentrale deel van die land is, was dié instelling se geboorte glad nie maklik nie. MICHELÉ O'CONNOR het met prof. Frederick Fourie, rektor, oor die nederige begin van dié instelling gesels.

DIE behoefte aan 'n eie universiteit in die Vrystaat het reeds in 1855, kort ná die stigting van Grey-kollege, kop uitgesteek.

Grey se manne het hulleself teen 1890 begin voorberei om die intermediêre B.A.-eksamens af te lê. Dié eksamen het hulle toegang gegee tot die tweede jaar van 'n B.A.-graad aan die destydse University of the Cape Good Hope, nou die Universiteit van Kaapstad.

"Presidente F.W. Reitz en M.T. Steyn het destyds albei die stigting van 'n universiteit hier bepleit. Die grootste rede was sodat die seuns van die Vrystaat nie weggestuur word nie.

"Dié twee se droom is op 28 Januarie 1904 bewaarheid toe ses studente hulle onder dr. Johannes Bril, as hoof/rektor van Grey-kollege, vir die graad B.A. ingeskryf het. Dié graad is aanvanklik deur die Kaapse universiteit toegeken.

"Net die klassieke tale soos Latyns en Grieks, die moderne tale, Nederlands, Duits en Engels, filosofie, geskiedenis, wiskunde, fisika, chemie, plant- en dierkunde is aanvanklik aangebied.

"Die UV se geboue het gegroei van 'n klein tweevertrek-geboutjie wat nou naby Huis Abraham Fischer staan, en verblyf in die Grey-kollege se seunskoshuis," sê Fourie.

Volgens hom is die universiteit se eerste raad en senaat tussen 1904 en 1920 saamgestel. Die eerste dosente is aangestel en die eerste geboue opgerig. "Dié tyd was egter baie moeilik.

"Die instelling het teen 1920 net 100 studente gehad en was geldelik in die knyp. Daar was geen vaste rektor nie en geen vooruitgang nie. Vrystaatse kinders is steeds na ander universiteite gestuur.

"Ds. J.D. Kestell, rektor van 1920 tot 1927, het egter dié instelling finaal gevestig.

"Hy het self studente van oor die hele Vrystaat gewerf en geld by onder meer kerke en banke ingesamel. Kestell het selfs Engelse ouers oortuig om hul kinders na die Greyuniversiteitskollege (GUK) te stuur en teen 1927 het dié instelling met 400 studente gespog.

"In die tydperk tussen 1927 en 1950 het die GUK weer verskeie terugslae beleef.

"In dié tyd was dit onder meer die Groot Depressie en die Tweede Wêreldoorlog. Die armblanke-vraagstuk het regstreeks op studente en dosente ingewerk en die politieke onderstrominge van dié tyd het die instelling ontwrig.

"Die GUK het egter oorleef en die Universiteitskollege van die Oranje-Vrystaat (UKOVS) is in 1935 gebore," sê Fourie.

Hy sê in dié tyd is verskeie fakulteite gevestig en teen 1950 het die UKOVS met 1 000 studente gespog.

Teen 1950 het dit 'n onafhanklike universiteit geword en die naam is verander na die Universiteit van die OranjeVrystaat (UOVS).

Dié tydperk is gekenmerk deur Afrikaner- en blanke selfvertroue en heerskappy. Studentegetalle het tot 7 000 in 1975 gegroei en heelwat vooruitgang het in dié tyd plaasgevind.

"Tussen 1976 en 1989 sukkel dieuniversiteit weer met onder meer ekonomiese krisisse, die land se politieke onstabiliteit en word die UOVS geï soleer.

"Een ligpunt in dié tyd is die toelating van die eerste swart studente, die nuwe Sasol-biblioteek en die fakulteit teologie wat die lig sien.

"Tussen 1990 en vanjaar het die UOVS verskeie op- en afdraandes beleef. Die universiteit doen nie net die eerste stappe van transformasie nie, maar begin ook aan 'n beleid van multikulturaliteit werk.

"Die UOVS se naam verander in 1996 na die Universiteit van die Vrystaat/University of the Free State en in 2001 word die Sotho-vertaling bygevoeg.

"Geldelike druk en probleme neem drasties toe en personeel word gerasionaliseer.

"Teen 2000 begin die UV met 'n draaistrategie en studentegetalle neem tot meer as 23 000 toe," sê Fourie.

Hy sê die UV het die afgelope eeu nie net verskeie terugslae oorleef nie, maar homself ook op verskeie gebiede as 'n leier gevestig.

Die universiteit behaal sy eie geldelike mikpunte, neem 'n nuwe taalbeleid van veeltaligheid aan en herbelê in personeel.

Die instelling inkorporeer die kampusse van die Vista- en Qwaqwa-universiteit en groei internasionaal.

Die UV vestig ook fondamente van 'n institusionele kultuur van verdraagsaamheid, geregtigheid en diversiteit.

"Die baba het in die afgelope eeu 'n gesonde volwassene geword."

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