Riding the waves of hope and despair: the lived experience of patients waiting for liver transplant

Nooredin Mohammadi, Esmaeil Shariat, Nahid Dehghan Nayeri

Abstract


Background: Nowadays, the number of patients with end-stage liver disease and the need for liver transplantation is significantly increased in Iran and worldwide. Candidate patients for liver transplant are on long waiting lists. This waiting period can have favorable or unfavorable impacts on patients’ life and provides an opportunity for patients to express their experiences and concerns about their current situation and future will help to reduce the skepticism and ambivalence about their expectations and to reduce the complications of this course. The purpose of this research was to understand the lived experience of patients waiting for liver transplant in Iran.

Materials and Method: In this study, Heideggerian phenomenological approach using the van Manen's six methodical activities. The main method of data collection was semi-structured interviews with nine patients who were on a waiting list for a liver transplant which were selected through purposive sampling. For the data management and analysis, MAXQDA software version 10 was used.

Findings: Participants were aged 29 to 63 with an average of 51.1 years of old who are all married and were on a waiting list for an average duration of 7.4 months. The main theme "riding the waves of hope and despair" with five sub-themes, including "vicissitude path", "inconsistent life cycle", "forming new insight", "a flash of hope in life" and "struggle with life conflicts" were extracted from the analysis of the data.

Conclusion: Lived experience of end-stage liver disease patients during the waiting period for an organ transplant reflecting the period that such patients must be spent on the waves of hope and despair so that, challenges and positive and negative experiences of waiting for a liver transplant had placed their life in a path full of ups and downs. This shows the importance of the need to promote the health care workers' especially the nurses' awareness and understanding regarding take care of such patients' during the waiting period.


Keywords


Lived Experience, waiting list, liver transplantation.

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