Development of a decision aid for parents

• Research type

  Research Study

• Full title

  Development of a decision aid for parents of a child with relapse neuroblastoma.

• IRAS ID

  249885

• Contact name

  Helen Pearson

• Contact email

  H.Pearson@soton.ac.uk

• Sponsor organisation

  University of Southampton

• Duration of Study in the UK

  3 years, 2 months, 31 days

• Research summary

  Background:
  Having a child diagnosed with cancer is described as one of the most stressful events for a family. About 126 children in the United Kingdom are diagnosed with neuroblastoma each year, and their prognosis is poor. Even after initial treatment, the disease often returns in 60-70% of children. With no standard treatment when the disease returns, these parents have to make many very difficult decisions over months or even years. This can be agonising for parents in a disease which has such a poor prognosis. We know from other studies that parents want to be involved in making decisions about their child’s treatment and look into all treatment options available to improve their child’s chance of survival. We also know decision aids can help in making treatment decisions. However, we do not know what it is like for parents to make a series of difficult treatment decisions over time and how these decisions evolve. Understanding this will help provide better support to this parent group through the development of a decision aid.

  Research aims:
  This study will develop a web-based decision aid to support parents of a child with relapse neuroblastoma who are making repeated treatment decisions.

  Design and methods
  The study will consist of two phases:
  Phase 1:
  Will review scientific literature to understand what is already known about repeated decision-making. Followed by interviews with 25-30 parents at different decision points (between the first and fifth decisions). This will explore how parents make repeated treatment decisions and how these decisions may change over time.
  Phase 2:
  The findings from phase 1 will inform the development of a decision aid. The development will follow the International Patient Decision Aids Standards. The decision aid will be tested with 15-20 parents and healthcare professionals to ensure it is easy to use and understand.

• REC name

  London - Bloomsbury Research Ethics Committee

• REC reference

  19/LO/1715

• Date of REC Opinion

  16 Dec 2019

• REC opinion

  Favourable Opinion