The experience of being an ‘extracorporeal membrane oxygenation’ relative within the CESAR trial

Abstract

This article reports a study exploring experiences of the relatives of adult patients receiving extracorporeal membrane oxygenation (ECMO) within the CESAR trial. Relatives of ECMO patients have undergone unique experiences which have not previously been addressed in the literature and thus may have different needs which may not be met by present practice. A grounded theory approach was adopted. In-depth unstructured interviews were conducted with family members of 10 surviving adult patients who had been randomized and received ECMO within the CESAR trial. Relatives have a range of needs specific to the ECMO experience, these include the depth and positivity of information. Particular areas for support were concerning a perceived self-inflicted nature of illness, personal guilt, distance from home, receiving 'the call', weaning from sedation and transfer/discharge from the ECMO unit. Relatives would benefit from the opportunity to talk about their 'ECMO experiences' following the patient's recovery to enable them and their families to 'move on'. Interventions need to be in place to follow-up relatives and patients to provide ongoing support to the family unit.