REFoRMS: Decision-Making V1
Research type
Research Study
Full title
Understanding Treatment Decision-Making Processes in Families where a Child or a Young Person has Relapsed or Refractory Rhabdomyosarcoma (REFoRMS)
IRAS ID
306786
Contact name
Bob Phillips
Contact email
Sponsor organisation
The University of York
Duration of Study in the UK
0 years, 11 months, 4 days
Research summary
Relatively little is known about how parents and guardians of children with cancer make decisions, about the actual processes involved in decision-making and about how opinions may vary within the same family. The experiences of fathers in making these decisions are under-represented in the literature, and the role that social media plays in decision-making is worthy of further examination.
We want to understand how patients and their families make decisions about treatment options for a type of childhood cancer called relapsed and refractory Rhabdomyosarcoma (RMS). We will use qualitative multiple case study in this study. This study has been designed in co-production with our study Patient and Public Involvement (PPI) group who are all bereaved parents with a child with RMS.
Case studies allow for the in-depth study of complex situations from multiple perspectives. In this study, each child or young person with relapsed or refractory RMS will form a case, and we will initially study each case as if they are a singular entity, before comparing them to other cases.
We plan to include between 10 and 20 cases in the study. We will invite parents and guardians to take part in an interview and complete a Lifegrid, a method of data collection in which participants construct a visual chronological representation of events, about their experiences of making decisions. We would also like to invite the child or young person themselves to take part in interviews, but this might not always be possible.
We plan to recruit families in two ways, via their clinical team at two hospitals in England, and via social media.
We will use the results of this study to develop a best practice statement to assist families and clinicians in making decisions about care and treatment for children with relapsed and refractory disease.
REC name
HSC REC A
REC reference
22/NI/0062
Date of REC Opinion
7 Apr 2022
REC opinion
Favourable Opinion