A qualitative exploration of the lived experience of decompressive craniectomy among acquired brain injury survivors.

PURPOSE: One in 19 people with severe traumatic brain injury, and other acquired brain injury, undergo decompressive craniectomy, an emergency life-saving neurosurgical procedure. This study explored the lived experience of brain injury survivors with craniectomy and identified implications for rehabilitation practice. MATERIALS AND METHODS: Qualitative semi-structured interviews were conducted in an inpatient specialist rehabilitation centre with adults who had severe acquired brain injury necessitating craniectomy within the previous year. Using a collaboratively-developed topic guide, interviews were recorded, transcribed verbatim, and analysed using reflexive thematic analysis. RESULTS: Six adults (five women) age 40-69 years participated. Their lived experience centred on three themes. Theme 1, understanding of craniectomy ("they took the stuff out of my head"), identified varying conceptualisations of craniectomy and anticipated future recovery after cranioplasty. Theme 2, appearance ("It makes me look totally different") explored a sense of disfigurement, then grappling and coming to terms with others' perceptions. On theme 3, vulnerability ("my brain is not protected"), patients anticipated changes to their activities upon discharge due to fear of falling and re-injury. CONCLUSIONS: Healthcare professionals can expect profound impact of craniectomy on brain injury survivors' sense of self and vulnerability, and should explore their perceptions of cranioplasty's influence on recovery.