Families experiences of participating in cancer trials. Version 2.1
Research type
Research Study
Full title
A study to explore the experiences of families of children participating in early phase cancer trials.
IRAS ID
194569
Contact name
Karen E Howe
Contact email
Sponsor organisation
London South Bank University
Duration of Study in the UK
0 years, 3 months, 30 days
Research summary
Despite awareness of the ethical and practical dilemmas associated with early phase trials in paediatric cancer little is known about the impact trial participation has upon the family from their perspective. This study will explore the lived experiences of families of children and adolescents enrolled in an early phase clinical trial at a paediatric oncology Principle Treatment Centre. Although survival rates in childhood cancer have dramatically improved, approximately 20% of children will relapse or have refractory disease and stand to derive some benefit from early phase trials. When proven conventional therapy fails, young people and parents of children with cancer may consider enrolling into an early phase trial. Through semi-structured interviews this study intends to seek parental stories of what it is like for the family as a whole during their childs' enrolment on an early phase cancer trial. Through exploration of parental views and experiences it is hoped the researcher will gain greater insight of the impact enrolment on an early phase cancer trial has upon the family. It is hoped that the study will not only identify area’s that parents and families find challenging but that it may also provide evidence of other hidden positive benefits that participation in an early phase trial may bring in this population. The knowledge gained will enable professionals to devise support strategies and care to improve the experience for future patients and families in this setting. The study is expected to run for 5 months.
REC name
London - City & East Research Ethics Committee
REC reference
16/LO/0230
Date of REC Opinion
22 Jan 2016
REC opinion
Favourable Opinion