Renal transplant failure and disenfranchised grief: Participants' experiences in the first year post-graft failure – a qualitative longitudinal study
Introduction
Renal transplantation is the treatment of choice for most patients with end-stage kidney disease (ESKD) (BTS/RA, 2011). Transplantation often has a transformative effect on patients and their families and can significantly improve quality of life (Gill, 2012). However, despite continued improvements in anti-rejection regimens, the life of a transplanted kidney is potentially finite. Rates of graft failure vary and are associated with a number of factors, such as type of donor and time since transplantation. Average graft survival rates for first time, adult renal transplant recipients in the UK are provided in Table 1.
Causes of transplant failure vary, but graft rejection is the most common factor (Sellares et al., 2012). The impact of transplant failure is considerable for patients and their families and feelings of grief, loss, anger, depression and even suicidal ideations are common (Streltzer et al., 1983, Carosella, 1984, Hudson and Hiott, 1986, Ouellette et al., 2006). Transplant failure can also cause a variety of other problems such as lethargy, diet and fluid restrictions, body image issues, increased dependency and the necessity for dialysis, which can compound depression further (Gill and Lowes, 2009).
Despite an emerging evidence base, the impact of transplant failure on patients and their families is under-researched, which significantly limits insight and understanding in this area. An extensive literature search was undertaken in 2008 and 2012–2013, using appropriate scholarly databases, such as CINAHL and MEDLINE. The following search terms were used, in various combinations: renal, kidney(s), transplant(s), transplantation, graft, failure, failing and rejection. However, very few empirical studies were found that explored the personal perspectives of renal transplant failure. Most of the relevant, available evidence is over 20 years old and/or in the form of case studies and/or clinical and anecdotal data (Carosella, 1984, Hudson and Hiott, 1986, Viswanathan, 1991, Gill and Lowes, 2009), which limits the scope and wider relevance of findings. The two most appropriate, comprehensive studies were conducted in the USA (Streltzer et al., 1983) and Canada (Ouellette et al., 2009). Both studies used primarily qualitative methodologies and highlighted the potentially devastating impact associated with renal transplant failure and the subsequent return to dialysis for renal transplant recipients.
However, both studies were conducted retrospectively, with some data collected over a decade post-graft failure. Participant responses were therefore subject to potential recall bias. Furthermore, most available research only explores recipients’ experiences of transplant failure and has failed to adequately explore the impact on spouses and other close family members (and therefore the impact on marital and family life), despite anecdotal evidence indicating that they are often affected in a similar way to transplant recipients. The retrospective design of most studies also limits understanding of how participants cope and adjust to transplant failure and there is an inadequate awareness of patient and family needs and expectations for information and emotional care and support pre and post-graft failure.
This lack of evidence significantly hinders understanding of the transplant failure experience that could be used to inform related practice and research. This prospective, longitudinal study was therefore undertaken to explore these complex issues in the first year post-graft failure, from the experiences of recipients and their spouses/significant others.
Section snippets
Study aims
The aims of the study were to explore participants’:
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Experiences of renal transplant failure.
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Coping mechanisms and factors that helped to facilitate emotional readjustment.
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Perceptions of health care service provision, pre and post-transplant failure.
Research approach
Given the study aims, the research was undertaken using a phenomenological, longitudinal approach, informed by Heideggerian hermeneutics (Walters, 1995). Phenomenology is both a philosophy and a research approach (Morse and Field, 1995). As a
Findings
Five central themes were identified from the analysis process:
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Life with a transplant.
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The impact of transplant failure.
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Treatment issues and options.
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Coming to terms with transplant failure.
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Provision of healthcare services.
The impact of transplant failure
Renal transplant failure affects many aspects of personal and family life and therefore has a profound impact on patients and their families, regardless of time since transplantation or source of donor organ (i.e., live or deceased). Feelings of grief, loss, sadness, guilt (in the case of live transplantation) and depression are common and pervasive (Gill and Lowes, 2009, Ouellette et al., 2009, Streltzer et al., 1983). This study demonstrates that the impact on spouses is also considerable
Conclusion
This study has provided an extensive insight into the renal transplant failure experience and highlighted the devastating impact that graft failure has on recipients, their spouses and other close family members. Data demonstrate that the experiences of participants in this study have the essential features of disenfranchised grief. It is therefore postulated that the concept of disenfranchised grief offers an appropriate framework for understanding the psychosocial consequences associated with
Conflict of interest
None.
Funding
Study was funded by RCBC Wales. RCBC monitored progress quarterly over a 2 year period and required a final report on completion of research
Ethical approval
Details of ethical scrutiny/approvals obtained.
Acknowledgements
We would like to thank the following for their assistance; Dr Richard Banks, Dr Coralie Bingham, Dr Chris Burton, Kay Hamilton, Maria Langdon, Dr Chris Shaw, Dr Jo Taylor
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