Interpretative Phenomenological Study Exploring Why People With Kidney Failure Say ‘No’ to a Kidney Transplant

ABSTRACT

Aim

To develop an in-depth understanding of peoples' perceptions and experiences of decision-making and reasons why they declined the opportunity of a kidney transplant.

Design

The Theory of Planned Behaviour informed the qualitative interpretative phenomenological analysis.

Methods

Semi-structured interviews were conducted between August 2022 and June 2023 with thirty adults in the United Kingdom who had declined a kidney transplant. Interviews were digitally recorded and transcribed verbatim.

Findings

Deciding against having a kidney transplant for the majority of people was a concrete decision. Multiple reasons transcended four cross cutting themes: The impact of negative past experiences on kidney transplant decision-making, Negative attitudes, beliefs, and perceptions towards kidney transplantation, Preferred not to have a kidney transplant, and Perceived benefits of deciding against a kidney transplant. Earlier negative experiences culminated in mistrust. People feared kidney transplant failure and were not willing to take the risk of being worse off. Some people perceived they were too old and preferred younger people to be offered available kidneys. COVID-19 negatively impacted some people's decisions.

Conclusion

Despite people's decisions being perceived as at odds with healthcare professionals and current policies to increase transplantation rates, overall, the decision not to have a kidney transplant appeared carefully thought through.

Implications for the Profession and/or Patient Care

People's choices were informed, multifaceted and shaped by personal experiences, perceived risks and individual values. Recognising these factors is essential in improving patient-centred care and shared decision-making. Nurse-led patient education needs to carefully balance promoting kidney transplant as the preferred kidney replacement treatment option.

Impact

The findings contribute new understanding and theory as to why people living with kidney failure decide against having a kidney transplant. Perceived benefits of not having a transplant outweighed potential advantages, and patients exercised their legal right to make an informed decision.

Reporting Method

COREQ and SRQR.

Patient or Public Contribution

People living with kidney disease were involved from the outset; their contributions included prioritising the research question, shaping the study design, commenting on participant documents, analysing, interpreting findings and dissemination.