Highlights
- •Patients and caregivers face challenges when relocating to access transplant care.
- •Supports are needed during relocation so the patient can focus on medical needs.
- •Patient and caregiver perspectives are needed to understand the challenges of relocation.
Abstract
Background
For 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.
Objective
This 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?
Methods
We 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.
Results
Patients 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.
Conclusion
During 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.
Keywords
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References
Heart Failure (2020). In heart and stroke foundation. Retrieved from: https://www.heartandstroke.ca/heart-disease/conditions/heart-failure.
- Oxford English dictionary Online.Oxford University Press, 2017
- I'm a foreigner there: landscape, wellbeing and the geographies of home.Health Place. 2019; 62: 1-8
- Patients’ discharge experiences: returning home after open heart surgery.Heart Lung. 2011; 40: 226-235
- The meaning of place in families lived experience of pediatric outpatient care in different settings: a descriptive phenomenological study.Health Place. 2014; 31: 46-53
- What makes a house a home: the role of material resources in recovery from severe mental illness.Am J Psychiatr Rehabil. 2005; 3: 243-256
- The role of home in HIV/AIDS: a visual approach to understanding human- environment interactions in the context of long-term illness.Health Place. 2008; 14: 313-322
- Next of kin caregivers in palliative home care – from control to loss of control.J Adv Nurs. 2008; 64: 578-586
- Negotiating barriers, navigating the maze: first Nation peoples experiences of medical relocation.Can. Public Adm. 2015; 58: 295-314
- The impact of travel on cancer patients experiences of treatment: a literature review.Eur J Cancer Care (Engl). 2000; 9: 197-203
- Distance as a barrier to cancer diagnosis and treatment: review of the literature.Oncologist. 2015; 20: 1378-1385
- What is phenomenology?.Medsurg Nurs. 2010; 19: 127
- How phenomenology can help us learn from the experiences of others.Perspect Med Educ. 2019; 8: 90-97
Article info
Publication history
Published online: October 28, 2022
Accepted:
October 14,
2022
Received in revised form:
October 14,
2022
Received:
August 9,
2021
Identification
Copyright
Crown Copyright © 2022 Published by Elsevier Inc. All rights reserved.
