‘Make Them Wonder How You Are Still Smiling’: The Lived Experience of Coping with a Brain Tumour
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Date
2023-04-07Author
Zanotto, Anna
Goodall, Karen
Ellison, Marion
McVittie, Chris
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Zanotto, A., Goodall, K., Ellison, M. and McVittie, C. (2023) ‘“Make them wonder how you are still smiling”: the lived experience of coping with a brain tumour’, Qualitative Health Research, 33(7), pp. 601–612. Available at: https://doi.org/10.1177/10497323231167345.
Abstract
A brain tumour can be a life-threatening illness and cause unique symptoms compared to other
types of cancer, such as cognitive or language deficits, or changes in personality. It is an
exceptionally distressing diagnosis which can affect quality of life, even for those with a lowgrade tumour or many years after the diagnosis. This study sought to gain an in-depth
understanding of the lived experience of adjustment to living with a brain tumour. Twelve
individuals (83% female) with a primary brain tumour (83% low-grade) took part in the study.
Participants were aged 29-54 years, on average 43 months following the diagnosis, and were
recruited through the charitable support organisations in the United Kingdom. In-depth semistructured interviews were conducted, transcribed verbatim and analysed using interpretative
phenomenological analysis (IPA). Six inter-related themes were identified: making sense of
the diagnosis, seeking empowerment, feeling appreciative, taking charge of coping, learning
to accept, and negotiating a new normality. Notions of empowerment, gratitude, and
acceptance throughout the illness journey were prominent in the participants’ narratives.
Receiving sufficient information and initiating treatment were important in negotiation of
control. The results highlighted what facilitates and hinders adaptive coping. Among the
aspects which facilitated positive coping were: trust in clinician, feeling in control, feeling
grateful or accepting. Participants on a ‘watch and wait’ approach, while feeling appreciative,
perceived the lack of treatment as difficult and frustrating. Implications for patient-clinician
communication are discussed, particularly for patients on a ‘watch and wait’ who might need
additional support in adjusting.