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
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.Lay summary of study results:
This study spoke with parents who were making treatment decisions for their child with relapsed or refractory neuroblastoma. This is a childhood cancer which has low survival rates. Eighteen parents were spoken to and the findings generated four themes which influenced, informed and supported parents in making these decisions. The four themes were: 1) time as a structure within decision-making; 2) uncertainty and its relationship with treatment risks, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; and 4) parent involvement and responsibility in decision-making. There were relationships between these themes which were shown is a diagram. The findings from this study were then used to inform a website which was designed with parents to support their decision-making needs.REC name
London - Bloomsbury Research Ethics Committee
REC reference
19/LO/1715
Date of REC Opinion
16 Dec 2019
REC opinion
Favourable Opinion