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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

OSM opening concert 2012

2012-03-02

The OSM Camerata is going to shine in the very first annual OSM opening concert.
1 March 2012

OSM opening concert 2012 with the OSM Camerata
Conductor: Nicholas Nikolaidis
Date: 1 March 2012
Venue: Odeion
Time: 19:30

The OSM opening concert 2012 with the OSM CAMERATA will be streamed live on the internet with the generous support of OSM partner, LA MUSE AUDIO & LIGHTING (www.ufs.ac.za/ufslivestreaming) in collaboration with the UFS LIVE STREAMING UNIT.

The OSM Camerata is going to shine in the very first annual OSM opening concert. The ensemble will be conducted by Nicholas Nikolaidis. The programme includes excerpts from Stabat Mater (Pergolesi), Romanian Folk Dances (Bartók), Pelimannit (Rautavaara), Elegy (Grové) and Purple Haze (Hendrix). since 2011, the Odeion School of Music has embarked on a new, innovative strategy striving towards uncompromising excellence and internationalisation, which includes the A-List scholarship programme and a new flagship chamber ensemble, the OSM Camerata. Talented South African, conductor/tenor Nicholas Nicolaidis, (runner-up in the First National Len van Zyl Orchestral Conducting Competition) will take the stage for the inaugural concert of the OSM.

Nicholas started his conducting career at an early age while still in the Drakensberg Boys’ Choir School. Professionally his first conducting post was as choirmaster and conductor of the choir and band at Pridwin Preparatory School (Melrose, Johannesburg) in 1996.

Following his appointment in April 1997 as the Musical Director of Côr Meibion Cymru de Affrig (The Welsh Male Voice Choir of South Africa), he conducted the choir for seven years, producing three albums. One of the highlights was the performance at the Royal Albert Hall in London in October 2000 for the Millennium Festival of Male Voice Choirs.

His orchestral conducting debut was in 1998 at the Johannesburg City Hall where he conducted the Johannesburg Festival Orchestra and the Symphony Choir of Johannesburg in a few items of ‘Last Night of the Proms’. Selected conducting performances include the Chanticleer Singers in a performance of Schubert’s Mass in G at the Holy Trinity Church (Braamfontein, Johannesburg) in 2002, and the Johannesburg Camerata, a chamber orchestra consisting of talented young performers, during their winter season in 2005.

In 2006, Nicholas enrolled at Stellenbosch University for a Master’s degree in Choral Conducting under the direction of the Norwegian pedagogue, Kåre Hanken. During this time, he also conducted the Johannesburg-based chamber choir, Collegium Vocale. He conducted the Johannesburg Chamber Wind Ensemble from 2006 to 2008.

In 2009, he conducted the Johannesburg Festival Orchestra in a programme of music by Leroy Anderson, the vocal ensemble, In Verse, and the Chanticleer Singers during their Christmas season. Nicholas was also the winner of the inaugural Young Choral Conductors Competition held during the Stellenbosch International Choral Conducting Symposium in March 2009.

In February 2010, he was awarded the Silver Medal in the inaugural Len van Zyl Conducting Competition held in conjunction with the Cape Philharmonic Orchestra. During the Easter period of 2010 he conducted Cantamus Corde in a performance of JS Bach’s St John’s Passion, whilst also singing the role of the Evangelist.

Nicholas has also appeared as guest conductor of the Philharmonia Choir of Cape Town in a concert with music by Ramirez and Klatzow. In that year he also conducted the gala Concert of the Brooklyn Theatre (Pretoria).

Refreshments will be on sale before and after the concert.

Admission:
R60 (adults)
R40 (pensioners, students and learners)
Tickets available at Computicket.

Enquiries:
Ninette Pretorius (Tel: +27(0)51 401 2504)

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