Parents also play a vital role in supporting other parents and sharing information. Some parents have been (and continue to be) the driving force to influence treatment change and introduce Ponseti to their country or region. The strength and dedication of Ponseti parents should not be under-estimated.
Having a child with clubfoot is a four to five year commitment: to take your child to the clinic every week, to look after the cast at home, to be on the lookout for any problems, and, when it is time for the brace, to make sure that your child wears it for 23 hours a day initially, and to follow the brace schedule for a few years.
Ponseti for Parents© is a pioneer method for clubfoot education – the first multimedia education programme developed for parents by the mother of a child born with clubfoot. It is designed to be used at weekly clubfoot clinics, using trained parent advisers, illustrated leaflets and posters, an educational DVD, and it can be integrated with follow-up calls or texting support.
The first-time parent meets a STEPS trained parent adviser and gets a take-home leaflet that has basic information on clubfoot, a treatment overview, and the casting phase. The second take-home leaflet is for the start of the brace phase.
STEPS has also produced a Ponseti educational DVD to show at clinics.
Recent studies, and anecdotal reports we have received from clubfoot clinics, show that family support and education with a positive message encourages parents to follow treatment guidelines, and reduces recurrence.
Ponseti for Parents© has had a very positive response by both clinic staff and parents where it has been introduced so far, and STEPS plan to roll it out to all clubfoot clinics where we offer support.
Deborah, a mother of a child born with clubfoot, says: “This clubfoot journey we have been on is very overwhelming for myself and my fiance as we’ve been everywhere and no one could help us. We have really needed support through this. All it took was one phone call to Steps and they could help us.
“I arrived at Tygerberg feeling very anxious and nervous, where I was handed a leaflet explaining clubfoot and The Ponseti Method and I could speak to a parent who had been through the process and see her son running through the hospital hallways. This took away all my fears instantly. It’s very difficult to put in words what it has done for me. It is amazing.”
The Ponseti for Parents© materials are available in five languages (English, isiZulu, isiXhosa, Setswana and Sesotho) and are being translated into more languages. If you are interested in learning more about the Ponseti for Parents © programme, or introducing it at your clinic, please contact us.