“Only the Sufferer Knows”: Long-term problems and experiences of kidney transplant recipients: A phenomenological study

Abstract

Background

Understanding the experiences of kidney transplant recipients is important to ensure their inclusion in key strategies and future planning of renal services.

Aim

To explore the long-term problems and experiences of adults who have had a kidney transplant due to end-stage kidney disease after discharge.

Methods

This was a descriptive phenomenological study. The data were collected through in-depth interviews. A personal information form and semi-structured interview guide were used in the interviews. The interviews were recorded using a voice recorder and conducted by adhering to the semi-structured interview guide. When data saturation was reached and no new information emerged, data collection was terminated after the 17th participant, whose responses were found to be repetitive. In this study, a descriptive phenomenological design and thematic analysis approach based on Husserl’s philosophy was used. The data analysis process was carried out independently by all researchers. Throughout this process, the researchers held regular meetings to discuss and compare the emerging findings. Individual, semi-structured, in-depth interviews were transcribed verbatim. The findings were analysed using Colaizzi's seven-step analysis.

Results

In total, 17 kidney transplant recipients (five women and 12 men) were included in the study. In the data analysis process, three main themes and 10 sub-themes were identified. Main themes: (i) problems experienced by kidney transplant recipients, (ii) inevitable fears, and (iii) situations that only individuals with kidney transplants can understand — “Only the Sufferer Knows”. Sub-themes: management of drug therapy, role–relationship management, permanent treatment responsibilities and burden, fear of rejection, fear of returning to dialysis treatment, pervasive fear of routine examination results, significance of kidney transplant surgery, sense of gratitude towards the donor, being ‘sick’ in the eyes of others, and not being understood by others.

Conclusion

This study provides new insights into understanding the lives of post-transplant kidney transplant recipients. Renal healthcare professionals should focus on the psychological impact as much as the biological impact on recipients of kidney transplants.