Annette Boaz1, Myfanwy Morgan2. 1. Faculty of Health, Social Care and Education, St. George's, University of London & Kingston University, London a.boaz@sgul.kingston.ac.uk. 2. Department of Primary Care & Public Health Sciences, Division of Health and Social Care Research, School of Medicine, King's College London, London.
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.
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.
Authors: Emily L Tucker; Abigail R Smith; Mark S Daskin; Hannah Schapiro; Sabrina M Cottrell; Evelyn S Gendron; Peg Hill-Callahan; Alan B Leichtman; Robert M Merion; Stephen J Gill; Kayse Lee Maass Journal: BMC Nephrol Date: 2019-05-16 Impact factor: 2.388
Authors: Javier Roberti; Amanda Cummings; Michelle Myall; Jonathan Harvey; Kate Lippiett; Katherine Hunt; Federico Cicora; Juan Pedro Alonso; Carl R May Journal: BMJ Open Date: 2018-09-04 Impact factor: 2.692