Working to establish ‘normality’ post-transplant: A qualitative study of kidney transplant patients

Abstract

Objectives To explore patients’ perceptions and experiences of ‘normality’ and the influences on this at three time points post-transplant. Methods In-depth interviews with 25 patients at three months, one year and more than three years following kidney transplant. Patients’ accounts were compared with Sanderson et al.’s typology of types of normality. Findings Post-transplant, patients worked hard to re-establish normality, albeit in a ‘reset’ form. This normality was a very personal construct, shaped by a wide range of factors including age, gender and personal circumstances. Some patients encountered significant challenges in regaining normality, both at three months for those experiencing acute and distressing side effects, and later relating to the long-term side effects of transplant medication and co-morbidities. However, the most dramatic threat to normality (disrupted normality) came from episodes of rejection and transplant failure. Conclusions The main types of normality achieved vary for different conditions. Moreover, despite improvements in health post-transplant and opportunities to build a new, reset normality, the participants recognised the need to pay careful attention to the spectre of future ill health and transplant failure. Transplant failure was therefore a source of disruption that was central to their illness narratives and perceived as an ever present risk.