Background MRI is essential to the clinical management of children and young people with brain tumours. Advances in technology have made images more complicated to interpret, yet more easily available digitally. It is common practice to show these to patients and families, but how they emotionally respond to, understand and value, seeing brain tumour MRIs has not been formally studied.
Methods Qualitative semi-structured interviews were undertaken with 14 families (8 patients, 15 parents) purposively sampled from paediatric patients (0 to 18 years) attending a large UK children’s hospital for treatment or monitoring of a brain tumour. Transcripts were analysed thematically using the Framework Method.
Results Four themes were identified: Receiving results (waiting for results, getting results back, preferences to see images), Emotional responses to MRIs, Understanding of images (what they can show, what they cannot show, confusion) and Value of MRIs (aesthetics, aiding understanding, contextualised knowledge/emotional benefits, enhanced control, enhanced working relationships, no value). All families found value in seeing MRIs, including reassurance, hope, improved understanding and enhanced feeling of control over the condition. However emotional responses varied enormously.
Conclusions Clinical teams should always explain MRIs after ‘framing’ the information. This should minimise participant confusion around meaning, periodically evident even after many years. Patient and parent preferences for being shown MRIs varied, and often changed over time, therefore clinicians should identify, record and update these preferences. Time between scanning and receiving the result was stressful causing ‘scanxiety’, but most prioritised accuracy over speed of receiving results.
- qualitative research
- patient perspective
- paediatric practice
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Contributors NT contributed to conception and design of study, carried out the data collection, analysis, drafted the manuscript and proofed the final manuscript as submitted. Contributions to conception and design of study, input on initial data analysis and substantial guidance and input for developing the manuscript was given by AP, SG, SN, JA and ME. All authors read and approved the final manuscript.
Funding The funding for the research was provided by an NIHR Research Professorship NIHR-RP-R2-12-019 awarded to Professor Peet.
Competing interests None declared.
Ethics approval West Midlands - Black Country Research Ethics Committee WM/16/WM/0490.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Access to field notes and anonymised printed transcripts of the interviews will be restricted to individuals granted permission by one of the authors, for the purposes of this or future research.
Patient consent for publication Obtained.
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