Parents’ experiences of donation to their child before kidney transplantation: A qualitative study

Abstract

Aim and objectives To explore parents’ experiences of donation to their child before kidney transplantation. Background Transplantation is the treatment of choice for paediatric patients with end‐stage renal disease. Living donor kidney transplantation has shown a higher long‐term transplant survival compared to deceased donor transplantation and entails a more controllable process, with shorter waiting time. Besides complex care and treatment of their child, parents must reflect on the prospects of being a donor for their child. However, little is known about the parent donor and parent caregiver perspective. Design A qualitative exploratory study taking a phenomenological‐hermeneutic approach. Method The study was conducted in a Danish university hospital. Interviews were conducted with the parents of seven children, aged between 5–15 years, with end‐stage renal disease in the period before kidney transplantation. Data were analysed with inspiration from Ricoeur's theory of interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion. Results The decision about donation was experienced as a matter of course and commitment. There were preferences for a kidney from a living donor, including the hope of being accepted as a donor. Being refused as a donor revealed feelings of powerlessness. However, transformation was performed into having a new role providing care and comfort to the child during the transplant process. Asking family and friends about donation could feel like crossing a line. Conclusion The prospect of donating to one's child had an impact on the well‐being of the entire family. Parents were in a vulnerable situation and in need of support, regarding both living and deceased donation. Waiting time included hopeful thoughts and reflections on a new caregiver role for the child during transplantation. Relevance to clinical practice Health professionals’ attention, engagement and dialogue are essential in order to gain extensive and varied knowledge about the individual parent's experiences and the well‐being of the entire family to provide care and support before, during and after the donation and transplantation process.

An intersectional gender analysis in kidney transplantation: women who donate a kidney

“…One contribution of our study was to find differences between women when delving more deeply into this aspect. Moreover, as other studies [38,60], participants with biological kinship bonds said that they saw their donation as a 'natural thing', as the natural consequence of family bonds, as a matter of course within the family. We understand this normality as a social construction that is framed in a certain context [61].…”

The significance of relationships and dynamics in families with a child with end‐stage kidney disease: A qualitative study

“…However, if they did not grasp the family's difficult and complex situation, this could lead to frustration and disappointment. One study found that talking to friends and family, for example about the need for a kidney donor, could be followed by feelings of vulnerability and disappointment if those who were asked declined (Agerskov et al, ). Geense et al () found that parents turned to their family and friends for a listening ear, understanding and sympathy and to share their emotions and feelings.…”

“…Managing an everyday life with a child on haemodialysis has a long‐term impact on a variety of psychosocial areas, including the parents’ relationship, social lives and mental well‐being (Tong et al, ). Further, thoughts about the child's need for a kidney transplantation cause reflections of finding a suitable donor and fear of onset of dialysis treatment and the need of being referred to the transplant waiting list (Agerskov, Thiesson, Specht, & Pedersen, ). In addition, parents experience difficulties in balancing the needs of their child with their other responsibilities, such as work, social life and other family members’ needs (Law, Fisher, Eccleston, & Palermo, ).…”

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

“…Parents may worry that a suitable organ will not be found in time due to the long waiting times children endure when compared to adults, in the UK alone. Despite every stakeholder's effort to find a viable organ(s) for transplant, it can take a long time as waiting lists continue to grow, and if waiting times persist, there is the possibility that their child could die waiting (Agerskov et al, 2018).…”

“…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).…”