Bjørk Ida Torunn, Nåden Dagfinn
Institute of Nursing and Health Sciences, University of Oslo, Oslo, Norway.
Nurs Inq. 2008 Dec;15(4):289-98. doi: 10.1111/j.1440-1800.2008.00418.x.
Organ transplantation has increased worldwide while the number of organ donors have not increased similarly. Consequently, the waiting period for transplant candidates is prolonged. Patient narratives have uncovered physical and psychosocial suffering in the transplantation process. However, relatively few studies have explored patients' experiences in the actual waiting period. This qualitative study was conducted in Norway and aimed to describe patients' experiences of being accepted as recipients of a new liver and their waiting following this decision. A sample of 21 patients with end-stage liver disease, placed on the ordinary waiting list for a liver transplant, were interviewed in the hospital before they went home to wait for a compatible liver. Uncertainty related to life and death was a major issue, both in the waiting period and as a response to being put on the waiting list. Another central issue was their overwhelming lack of energy. Patients inferred a linear relationship between lack of energy, physical limitations and mental distress. Despite major advances in medical treatment, little follow-up was given during the waiting period and most of the patients seemed resigned to the inevitability of their suffering. This raises issues of health personnel responsibility and a need to heighten awareness about patient suffering during the waiting period.
器官移植在全球范围内有所增加，而器官捐献者的数量却没有相应增加。因此，移植候选者的等待期延长了。患者的叙述揭示了移植过程中的身体和心理痛苦。然而，相对较少的研究探讨了患者在实际等待期的经历。这项定性研究在挪威进行，旨在描述患者被接受为新肝脏接受者的经历以及在此决定后的等待过程。对21名终末期肝病患者进行了抽样，这些患者被列入肝脏移植的普通等待名单，在他们回家等待合适肝脏之前，在医院接受了采访。与生死相关的不确定性是一个主要问题，无论是在等待期还是作为被列入等待名单的反应。另一个核心问题是他们极度缺乏精力。患者推断精力缺乏、身体限制和精神痛苦之间存在线性关系。尽管医疗取得了重大进展，但在等待期很少有后续跟进，大多数患者似乎听天由命地接受了他们苦难的必然性。这引发了卫生人员责任的问题，以及提高对等待期患者痛苦认识的必要性。
