Mastering Together the Highs and Lows: Patients' and Caregivers' Perceptions of Self-Management in the Course of Liver Transplantation

摘要

Context: Self-management in chronic illness involves complex medical, role-related, and emotional tasks. Still, while self-management support of patients and their families has become a cornerstone of chronic illness care, information is limited as to how liver transplant (LTx) patients and close caregivers perceive self-management before and after transplantation. Objective: To explore self-management tasks in view of medical, role-related, and emotional tasks in LTx candidates and recipients and their respective close caregivers. Design and Participants: For this qualitative study, focus group interviews were conducted and analyzed using knowledge mapping according to the 3 above-noted self-management categories. German-speaking adults who were wait-listed for or had received LTx and who were being treated in University Hospital Zurich or who were close caregivers to such patients were eligible for participation. As patients' data were closely related to those of the caregivers, the 2 groups' data sets were merged during the final development of themes. Results: Thirty participants comprised 7 focus groups. The main theme was "The current state of health determines the daily rhythm.'' The essence of how patients and caregivers described their self-management tasks is compiled in "Mastering together the highs and lows'' which comprises 3 core themes: mastering medical management, managing roles together, and managing the highs and lows of emotion. Conclusion: Patients and close caregivers prioritized self-management tasks as follows: first medical, then role-related, and finally emotional management. Over the course of LTx, health-care professionals should acknowledge this ranking while providing individualized support to both patients and caregivers.