Understanding patients’ experiences of recovery after staged complex aortic repair: a phenomenological study

AIM: To explore patients' with complex aortic diseases lived experiences of recovery between and after staged endovascular aortic repair (EVAR) procedures, including adjunctive open surgery. DESIGN: Qualitative descriptive phenomenological design, applying person-centred care and lifeworld-led health care. METHODS: Patients operated on in a staged fashion between 2012-2017 were invited to participate. Six participants underwent in-depth interviews 1-5 years postoperatively. The interviews were analysed using descriptive phenomenological method. FINDINGS: The essence of the patients' experiences was described as: a necessary, overwhelming, hard, and prolonged process with life changing consequences. Between the operations: expected tiredness where life goes on as usual and insufficient time for recovery. Short-term after all operations: overwhelming tiredness, pain and complications, mostly from neurological deficits. Losing 'yourself' and struggling to manage daily life one day to another. Long-term after all operations: gradually recovering back to 'yourself' and having to accept life with permanent setbacks and limitations. CONCLUSION: Patients with complex aortic diseases struggle with physical and psychological setbacks, continuing years after their operations. There is a need to prospectively assess different aspects of these patients' recovery, identify those with impaired recovery and establish preventive and supporting strategies. IMPACT: Patients' experience of recovery after staged aortic repair has not previously been investigated. The findings indicate that these patients struggle with various physical and psychological setbacks continuing years after their operations. These results will inform further research on this group of patients and guide healthcare professionals in the care of these patients in their transition back to recovery.