Patients and caregivers perspectives of the connection between home and the transplant journey

Abstract

BackgroundFor many heart failure patients, a heart transplant is required. Few hospitals in Canada perform heart transplants; thus, patients and caregivers must relocate to access transplant care. ObjectiveThis study explores Canadian patients’ and caregivers’ experiences of to access transplant care and how patients and caregivers define home. The study's goal is to gain insights from the patient and caregiver experience and identify opportunities to improve the experience for those who relocate to access heart transplants. The research question was: How is the concept of home connected to the heart transplant journey? MethodsWe conducted 18 interviews with advanced heart failure patients and caregivers, to explore patient and caregiver experiences of relocating to access transplant care. Patients and caregivers ranged in ages from 20′s to 60′s and had left their home of origin to move to a new location where medical care was available. 7 patients were male, 3 were female. All caregivers were female. ResultsPatients and caregivers identified three supports during relocation: other patients and caregivers, medical team and family. Patients and caregivers defined home as friends, family, community, warmth, safety, belonging and comfort. ConclusionDuring relocation, patients and caregivers were supported by: other patients and caregivers, their medical team and family, and how these people made them feel: safe, warm, comfortable and that they belonged is how they defined home. The supports and definitions of home are connected; thus, a sense of home is inextricably linked to the transplant journey for patients and caregivers.