Decision Making with Teenagers, Parents and Clinicians
Research type
Research Study
Full title
Principles and practices for involving young people in decision making about their care and treatment: A prospective participant observation study to inform policy and practice
IRAS ID
153276
Contact name
Emma/ ERD Day
Contact email
Research summary
This project seeks to understand how teenagers (13-19 years old), families and health care professionals’ experience participation in decision making regarding care and treatment. It focuses on young people aged 13-19 years diagnosed with leukaemia receiving their care and treatment in a tertiary hospital the UK.
A systematic review was completed in May 2014 to inform the direction of this project with comprehensive recognition of research published to date. We found no published prospective research addressing how teenage and young adults experience decision making and their role within it, nor any research which recognizes decision making across multiple encounters.
Adopting an interactionist understanding, this research will fill this gap by focusing on interactions in real time between young people, parents and health care professionals when decisions need to be made about the young person’s care and treatment. The project will appreciate these real time observed interactions alongside interview accounts from all parties involved. While the research concentrates on leukaemia, the decisions we will focus on (sperm banking and egg preservation, transplant, clinical trials, stopping curative treatment and place of care) are relevant for other conditions. Additionally these decisions are often made in the face of prognostic uncertainty making the findings relevant for other patient groups facing uncertainty.
This research sets out to identify how health care professionals and parents incorporate principles of involvement of young people in decision making into practice. Secondly, it will identify how young people themselves understand their involvement in both principle and practice. By focusing on interactions in real time we intend to highlight how involvement is enacted between the young person, the health care team and the parents. Analysis will then provide evidence-based recommendations to inform the development of guidance for how these three parties make decisions regarding care and treatment of a teenage patient.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
14/LO/1678
Date of REC Opinion
15 Oct 2014
REC opinion
Favourable Opinion