Young adults’ experiences of dialysis and kidney transplant decision-making.

Background Young adults with end-stage kidney disease make decisions to select a renal replacement therapy choice with the support of healthcare professionals once their kidneys fail. However, little is known about how they experience dialysis and kidney transplant decision-making and the effects on their well-being. Aim The aim was to explore how young adults who are diagnosed with end-stage kidney disease experience dialysis and/or kidney transplant decision-making, understand the meaning of their lived experiences, and investigate the effects of decision-making andchoice on their well-being. Methodology Interpretive phenomenology, informed by Heidegger’s hermeneutic principles, was used to purposefully recruit young adults with end-stage kidney disease through social media. A qualitative design using semi-structured interviews were conducted and the data analysed using Braun and Clarke’s thematic analysis approach. Findings Eighteen participants aged 18-30 years old were interviewed. Five themes developed from the analysis include: (1) world turned upside down; (2) experience of information delivery about options; (3) the experience of making my voice heard; (4) experiencing the new normal; and (5) the impact of decision-making and choice on well-being. Conclusion and original contribution This study illuminates our understanding of how young adults experience kidney therapy decision-making and their unmet informational and decisional needs. The majority struggle to cope due to the lack of support during the decision-making process. Kidney therapy decision-making and experiencing choice about therapies affect young adults’whole world and significantly impact their physical, psychosocial, and mental well-being.This thesis proposes a four-talk model, adding a new phase (‘implement talk’) to the existing phases (team talk, option talk, decision talk), to address some of the young adults’ unmet decisional needs and better support their well-being during the decision-making process.