The School of Health & Social Care

Impact revealed of having child with clubfoot

Page published 2 June 2011

BU academic and leading peers contribute to research into impact of clubfoot in children.

Parents of children born with clubfoot share many of the negative feelings and perceptions experienced by parents of children with more disabling conditions, according to new research carried out by the University of Aberdeen and Bournemouth University.

The Royal Children’s Hospital in Aberdeen also collaborated on the study – published in the International Journal of Orthopaedic and Trauma Nursing – which involved 15 families in the north east of Scotland with children aged between five months and 14 years who have been treated for clubfoot.

Shock, anger, self–blame, guilt and depression are among emotions felt by some families when diagnosis is first made of the condition which results in one or both feet being turned down and pointing inwards.

Around one or two babies in 1,000 are born in the UK with the condition – also known as congenital talipes equinovarus – thought to be caused by genetic and environmental factors.

Parents learning of their child’s condition via the 20–week pregnancy scan can also feel relief at the birth that their baby has this developmental disorder – which is more common in boys – and not a more serious problem.

The physical and emotional toll on parents who shoulder most of the burden of the treatment of clubfoot, plus the worries they have for their child’s future, are also revealed in the study which is one of the first accounts of parenting a child in the UK with the condition.

Professor Edwin van Teijlingen, Professor of Reproductive Health Medicine at Bournemouth University, said: "Some parents were worried about their child’s developing body image, about them having to deal with looking and feeling different, and whether they might be bullied at school.

"However some parents did not see much impact on their child’s general development. The child had accepted it and, usually, before the age of four, did not see themselves as being different.

"While the majority of parents did have concerns over their child’s future, most felt that their child would adapt and be able to cope in the long term."

The researchers say that healthcare workers should pay more attention to the emotional impact on parents of children with clubfoot.

Dr Zosia Miedzybrodzka, Reader in Medical Genetics at the University of Aberdeen and Director of Genetics at NHS Grampian, supervised the study together with NHS Grampian Consultant Orthopaedic Surgeon Mr Simon Barker, and the work was conducted by MSc student Marta Pietrucin–Materek.

Dr Miedzybrodzka said: "In the 15 years I have worked with families of children with clubfoot I have become aware that the condition is more of an issue for families than healthcare professionals believe it to be. The generally held view is that because the condition is treatable it does not affect families too much.

"However our study shows that this is not the case. The treatment for clubfoot puts a huge burden on families who have to deal with months and years of treatment with plaster casts and then boots with bars on their child’s legs, as well as frequent visits to the hospital."

Ms Pietrucin–Materek added: "Families also have to cope with their child’s pain as well as their restriction in movement and on being able to take part in activities. There are also practical problems to contend with, such as dressing the child during treatment, and then, after treatment, getting shoes to fit, because even though it is fully corrected, clubfoot can cause the foot to be smaller. Muscle wasting can also occur in the affected leg which can be slightly shorter."

The research showed that having a child with clubfoot also impacted on parents’ use of childcare provision with some parents uncomfortable about using such services especially if they felt their child looked different from other children.

The study has been welcomed by the charity STEPS set up to help families of children with lower limb conditions.

Sue Banton, STEPS’ Founder and Director, said: "This is an important study which documents the significance of meeting the emotional needs of parents and children which can often be overlooked in a clinical setting and raises the awareness of the impact that a diagnosis of clubfoot has on families. We hope that it will inform both antenatal and postnatal care pathways."

The research appears in the International Journal of Orthopaedic and Trauma Nursing. Parenting a child with clubfoot: A qualitative study; Marta Pietrucin–Materek, Edwin R. van Teijlingen, Simon Barker, Karen Forrest Keenan, Zosia Miedzybrodzka