‘I would describe myself as a deformed troll’: Using interpretative phenomenological analysis to explore body image struggles among palliative care patients

Abstract

Background: Illness adjustment is a widely studied area in the palliative care context. However, research focussing on how altered body image can affect men and women in palliative care is limited and unclear. Aim: To explore the links between palliative care patients’ affected sense of self, altered body image and terminal illness adjustment. Design: Semi-structured interviews were conducted, and the Interpretative Phenomenological Analysis approach was used to analyse patients’ experiences. Setting/participants: English-speaking, adult palliative care outpatients were interviewed at a local community hospice in the United Kingdom. The mean age was 55 years (ranging from 35–65 years). Results: Analysis of accounts indicated three superordinate themes: (1) ‘Not being me’: self-discrepancy, (2) existing in the landscape of loss, (3) living and thriving in the landscape of loss. The most disturbing issues, such as appearance-focussed struggles and low body-confidence, were stemming from participants’ frustration over their lack of control and their attachment to their former self-image. Conclusions: The patients’ insights demonstrated that body image distress was prevalent among all respondents regardless of gender or diagnosis. A spiral model is described showing how discrepancy-based processing (i.e. ‘not being me’) and rigid attachment to former self can have harmful consequences on palliative patients’ abilities to cope. In order to facilitate adjustment to a self-identity crisis resulting from a terminal diagnosis, it is necessary for professionals to recognise and address body image changes among palliative care outpatients.