Parents' perspectives and experiences of kidney transplantation in children: A qualitative interview study

Abstract

SUMMARY Background and Objective Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood. Methods Face‐to‐face semi‐structured interviews were conducted with parents of transplanted children across New Zealand. Data were analysed using thematic analysis to identify themes of participant experiences and perspectives. Results We interviewed 13 mothers and four fathers of the transplanted children. Four themes were identified: actively pursuing transplant (the urgency of transplant; needing to drive the transplantation process); lack of on‐going support (needing access to specialists; feeling unprepared for demands of transplantation, and vulnerability of unmet emotional concerns), pressure on the family unit (strain of distance; disrupting parent team; added burden of parent as donor; financial stress) and constant concern for the future (living with enduring uncertainty; pressure of responsibility; apprehension of teenage years). Conclusions Parents of children need to play an active role in advocating and driving the transplantation process. Transplantation leads to parental role disruption, emotional and financial stress, and insecurity about the future for their child. These findings suggest the need for greater communication and transparency in the transplantation process with parents, improved emotional and financial support for families during and after transplantation, and explicit assistance for parental roles in families when a caregiver is the donor.

Parenting a child with a kidney transplant—A study of everyday life experiences

“…Following kidney transplantation, recipients need to take medication daily, attend frequent follow‐up consultations, and undergo various clinical procedures, such as blood tests, blood pressure measurement, biopsies, and hospitalisation in case of fever. Interview studies, studies of family functioning, and health‐related quality of life report that parents have to adapt to the situation, which has a number of consequences and personal concerns related to the risk of graft rejection or loss, retransplantation, and mortality (Cousino et al, 2017; Fredericks et al, 2014; Mantulak & Nicholas, 2016; Walker et al, 2019a).…”

“…Although kidney transplantation can lead to improved child health and well‐being (Olausson et al, 2006; Tong et al, 2011), a number of interview studies show that parents are still in need of both emotional and practical support (Cousino et al, 2017; Geense et al, 2017; Mantulak & Nicholas, 2016; Tong et al, 2010; Walker et al, 2019a). In one study, disruption to family life meant that parents tried to cope as leaders of the family unit while, at the same time, facing multiple losses, such as reduced time spent with their spouse and children, social restrictions, or restrictions on travel (Tong et al, 2010).…”

Are we leaving parents behind? The importance of holistic care for children and parents undergoing organ transplantation

“…It is crucial to understand the context that parents are living within, namely their livelihoods, relationships with each other, their support networks and relationships with their children during such periods. There is a growing literature on these effects—such as the breakdown of marriages, lack of communication amongst parents, loss of hope, stress, concerns about their child's future and a lack of support (Agerskov et al, 2018; Walker et al, 2019). These factors can contribute to poor QOL as parents become pessimistic and believe that, until their child receives an organ transplant, the family unit cannot reunite.…”

“…It is vital to understand how this matter impacts on FF and QOL. Such research identifies variations in the impact on FF, whereby parents managing their child's illness in the pre‐transplant stage increase family demands (Anthony et al, 2014; Walker et al, 2019). The potential risks of transplantation are embedded in parents’ minds thereafter, especially in those who are better educated about their child's illness.…”

“…The potential risks of transplantation are embedded in parents’ minds thereafter, especially in those who are better educated about their child's illness. More knowledge about their child's illness increases fears of uncertainty relating to transplant complications, the child's prognosis and where they fit into the family unit, thus causing parental stress that leads to poor clinical outcomes as poorer family function links to a decline in medication adherence (Agerskov et al, 2018; Anthony et al, 2014; Walker et al, 2019).…”