Abstract
PURPOSE: Decompressive craniectomy is occasionally performed as a life-saving neurosurgical intervention in patients with acute severe brain injury to reduce refractory intracranial hypertension. Subsequently, cranioplasty (CP) is performed to repair the skull defect. In the meantime, patients are living without cranial bone protection, and little is known about their daily life. This study accordingly explored daily life among patients living without cranial bone protection after decompressive craniectomy while awaiting CP. METHODS: A multiple-case study examined six purposively sampled patients, patients' family members, and healthcare staff. The participants were interviewed and the data were analyzed using qualitative content analysis. RESULTS: The cross-case analysis identified five categories: "Adapting to new ways of living," "Constant awareness of the absence of cranial bone protection," "Managing daily life requires available staff with adequate qualifications," "Impact of daily life depends on the degree of recovery," and "Daily life stuck in limbo while awaiting cranioplasty." The patients living without cranial bone protection coped with daily life by developing new habits and routines, but the absence of cranial bone protection also entailed inconveniences and limitations, particularly among the patients with greater independence in their everyday living. Time spent awaiting CP was experienced as being in limbo, and uncertainty regarding planning was perceived as frustrating. CONCLUSION: The results indicate a vulnerable group of patients with brain damage and communication impairments struggling to find new routines during a waiting period experienced as being in limbo. Making this period safe and reducing some problems in daily life for those living without cranial bone protection calls for a person-centered approach to care involving providing contact information for the correct healthcare institution and individually planned scheduling for CP.