Dr Clare McKeaveney, School of Nursing and Midwifery, Queen’s University Belfast
Kidney transplantation is considered the best treatment choice for end-stage renal disease (ESRD) as it is associated with lower mortality and better psychosocial outcomes when compared to dialysis. It is well established that in most cases, kidney transplantation markedly improves a patient’s quality of life (QoL) however that quality is still lower than that of the general population. The majority of patients who receive a donor kidney can survive for many years allowing patients to be free from dialysis and be more active, returning a sense of ‘normality’ to their lives. However, kidney transplantation is not a cure and recipients continue to live with a chronic illness that requires ongoing care and support. As a consequence of the strict regimen of immunosuppressive medications, kidney transplant recipients experience significant physical and psychosocial challenges ranging from metabolic to cosmetic. In addition, both in the immediate perioperative period and during long-term follow-up many transplant recipients experience medication side effects and associated comorbidities that become central stressors impacting on QoL. A growing body of research into the psychosocial impact of kidney transplant has highlighted a range of difficulties including depression, generalised social and health anxiety, cognitive disturbances, body image concerns, sleep disturbances and pain (Bamford & Wirz, 2016). However, there continues to be ‘a notable absence…of patients’ own voices’ when trying to understand the totality of the experiences of kidney transplant recipients (Veater & East, 2016; p183). To date, little is known about the thoughts, feelings and experiences of kidney transplant recipients. There is a considerable lack of qualitative evidence exploring the holistic experiences of kidney transplant recipients which would inform healthcare practitioners on how to optimize post-transplant QoL.
The current National Institute for Health and Care Excellence (NICE) guidelines, recommends an intensive form of management to support adults with chronic illness which includes lifestyle, psychological and pharmacological therapies (2018). However, in the United Kingdom, kidney transplant recipients usually lack access to appropriate holistic care including psychological and social support. Despite the Renal Association and British Transplantation Society emphasis on ‘a more holistic environment’ (Baker et al., 2017; p 23) for transplant recipients, there is a current shortfall of holistic care, including psychological and social support for patients after they have received a kidney transplant. According to the UK Renal Psychosocial Workforce report (Seekles et al., 2017) only 5% of nephrology units in the UK employ the recommended number of psychologists whereas none employ the recommended number of social workers. Yet research has clearly demonstrated that robust psychological and social support is associated with better survival, medication adherence, reduced psychological distress, and improvements in health-related quality of life (HRQoL) including social functioning (Kellerman, 2012). HRQoL is a vital concern in chronic illness whereby medical treatment does not restore full health, therefore improving quality of life becomes an important patient reported outcome measure.
In order to fully inform and support transplant recipients, we need to know more about what life is like post-transplantation. Qualitative research is designed to gain insight into the participant’s world and create a deeper understanding of the quality and texture of the experiences of the phenomena (Willig, 2001). Therefore, such research can explore a wide range of experiences that arise for kidney transplant recipients including, but not limited to, biopsychosocial, emotional, financial, spiritual and sexual domains. It can also help healthcare providers understand patients’ experiences post-transplant with the aim of developing future supportive interventions which recognise and respond to their needs. Future research needs to provide an in-depth exploration of life after kidney transplantation to identify the holistic gaps in nephrology healthcare provision. In the future, this could help to improve current care and develop reflexive supportive pathways for kidney transplant recipients.
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Veater, N. L., & East, L. (2016). Exploring depression amongst kidney transplant recipients: a literature review. Journal of renal care, 42(3), 172-184.
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