Parental Grief Following the Brain Death of a Child: Does Consent or Refusal to Organ Donation Affect Their Grief?

Abstract

The purpose of this study was to investigate the grieving process of parents who were faced with the dilemma of donating organs and tissues of their underage brain dead child, and to explore the impact of their decision on their grief process. A grounded theory methodology was adopted and a semi-structured interview was conducted with 11 bereaved parents who consented to, and 11 parents who declined organ donation. Findings suggest that the core themes that characterize their grief and the main variables that affect their grieving process are similar for both donor and non-donor parents. Consent or refusal of organ donation per se does not seem to affect the overall grieving process. It is the meaning attributed to the act of donation that affects how parents perceive the child's death and subsequently facilitate or hinder their adjustment to loss.

We are deeply grateful to the parents who volunteered for this study by sharing their experience of the death of their child and their personal journey through bereavement. Moreover, they wish to thank Dr. Cleoniki Papazoglou, Dr. Irene Papazoglou and Ms. Dimitra Petraki for their valuable contribution at different stages in the research process. The study was funded in part by a grant from the Research Special Account of the University of Athens.