Critical heart disease - the relatives’ perspective

Background: Being a relative of a critically ill patient is associated with acute stress and the risk of neuropsychiatric late effects. Objective: To investigate the relatives' experiences in a cardiac medical intensive care unit with a view to identifying areas in which the relatives need support and promoting cooperation between relatives and staff. Method: Prospective, observational, questionnaire survey of 100 relatives of a semi-structured questionnaire. Relatives are included in the study on the patient's 3rd day of admission. Analysis of the open-ended questions was inspired by the thematic analysis. Results: Of 139 invited, 100 responded (71%). The relatives were mainly cohabiting / spouse (70%). The majority (78%) responded that it was great or very important to be involved in the care. A minor group (8%) reported that they received too little information. The thematic analysis revealed three themes in where the relatives favored honest and specific information about the patient's condition and prognosis, how they struggled in an unfamiliar setting and were depending on staffs help to cope with the situation. Conclusion: This study gives important insights into the relatives' feelings and needs when a patient is admitted to the intensive care unit. It is important that relatives are involved in the care and the relatives expect specific information about the patient's disease and prognosis. Future studies should investigate measures that can reduce stress and potential harmful effects in relatives.