Parental Experience of DEFO Suit in Children with Cerebal Palsy.

• Research type

  Research Study

• Full title

  An exploratory study to investigate the personal experience of the parents of children with cerebral palsy towards DEFO (Dynamic Elastomeric Fabric Orthoses): eliciting the views of parents of users to develop & inform services

• IRAS ID

  177478

• Contact name

  Shashivadan Hirani

• Contact email

  shashi.hirani@city.ac.uk

• Sponsor organisation

  City University London

• Duration of Study in the UK

  years, 12 months, days

• Research summary

  Currently in community children's physiotherapy clinical practice, we issue the DEFO (Dynamic Elastomeric Fabric Orthoses) suit for children with cerebral palsy to improve their functional activities. The DEFO Suit is designed to align the shoulders, torso and hips. It improves symmetry and assists stabilizing the body and spine. The DEFO suit provides proximal stability around the trunk and improves biomechanical re-alignment of the trunk. This allows them to have improved muscle tone which then increases their functional activities. This suit is issued to the parents of these children and expected to wear them for at least 8­hours a day (Lycra Protocol) to achieve its fullest benefit. Parents are the key person who makes the decision on this process in conjunction with their child’s therapist. Through our clinical practice we have seen children not wearing the suit as prescribed which then affects the actual Lycra Protocol. We know that the DEFO suit is the most hardest among the other DEFO garments to wear and the difficult configuration of the garment causes the most problems with adherence. The role of parent is extremely important in achieving adherence to the wearing protocol and the proposed potential benefits for the child; Hence it is important to collect the opinion of the parents as they are expected to follow the wearing regime at home/ school once the garment is issued. This research, through interviewing the parents and eliciting their beliefs and attitudes, will help to collect vital information required to generate recommendations on how to improve the experience of DEFO for the parents of the children with CP and get them to use the DEFO suit as prescribed to improve the benefit from it.

• REC name

  North West - Preston Research Ethics Committee

• REC reference

  15/NW/0365

• Date of REC Opinion

  28 Apr 2015

• REC opinion

  Further Information Favourable Opinion