Talking about decisions
Research type
Research Study
Full title
What does shared decision-making mean to children aged 8 to 12 years with Acute Lymphoblastic Leukaemia?
IRAS ID
193885
Contact name
Kirsten Huby
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 5 months, 28 days
Research summary
Participation in decision-making is advocated as it has been shown to improve health and social care outcomes for some patients as they become active participants in managing their own health. Whilst children have the right to be included in the decision-making process they are often excluded, possibly because of their actual or perceived level of competence.
Children with Acute Lymphoblastic Leukaemia (ALL) undergo treatment lasting between 2-3 years and acquire a vast amount of knowledge about their illness and its treatment. Due to the length of their treatment they are increasingly likely to develop the capability to participate in the decision-making process during their illness trajectory. This study aims to discover what children and young people with ALL understand about decision-making and the types of decision they may want to participate in making.
8 – 12 Children and Young people who are in the maintenance phase of treatment or in the first 12 months after completing treatment will be recruited from a Children’s Haematology and Oncology Day Unit in a large children’s hospital. Participants who consent to take part will be interviewed; these will last no more than 1 hour. A topic guide will be used to explore issues around what decision-making involves, who is involved in the decision-making process and how they are involved. Decisions children and young people are commonly involved in will be identified before considering decisions related to their treatment.
Once the data has been collected and analysed participants, their parents and members of the study's advisory group will be invited to attend an engagement workshop. This workshop is designed to feed back the findings from the study and ensure children and young people participate in establishing objectives for future research. Attendance at the workshop is optional
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
16/YH/0381
Date of REC Opinion
1 Sep 2016
REC opinion
Favourable Opinion