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.

An online explorative study towards parents’ opinions about organ donation: from individual decisions to family discussions

“…1 The decision to donate organs is influenced by many factors, including knowledge about donation, cultural and religious values, the circumstances surrounding the death, related hospital experiences, and the age of the potential donor. 2,3 In addition, factors from a more personal domain are involved: Have individuals thought about this topic for themselves and discussed it with each other and/or in a family setting?…”

The Influence of Spirituality, Race/Ethnicity and Religion on Parent Grief and Mental Health at one month and three months after their Infant's/Child's death in the Neonatal or Pediatric Intensive Care Unit

“…In adjusting to their loss and moving forward with their lives bereaved parents become emotionally stronger (Bellali & Papadatou, 2006;Buchi, et al, 2007). Their values and priorities are redefined, often finding material things less significant and developing a greater appreciation for family relationships (Armentrout, 2007;Barrera, et al, 2009;Bellali & Papadatou, 2006). In the final phase, many bereaved parents experience personal growth by beginning to find meaning and purpose in their lives.…”

“…Feelings of despair, loneliness and depression often occur (Armentrout, 2009;Laakso & Paunonen-Ilmonen, 2001). As bereaved parents become engulfed in their suffering, they spend a considerable amount of time talking about the deceased infant/child and keeping the deceased infant's/child's room unchanged (Bellali & Papadatou, 2006). At some point, most bereaved parents emerge from their grief and begin to gradually move forward with their lives.…”

“…The model suggests that they use their cultural, religious and/or spiritual beliefs to remain connected with their deceased child and to find meaning in their infant's/child's death. In adjusting to their loss and moving forward with their lives bereaved parents become emotionally stronger (Bellali & Papadatou, 2006;Buchi, et al, 2007). Their values and priorities are redefined, often finding material things less significant and developing a greater appreciation for family relationships (Armentrout, 2007;Barrera, et al, 2009;Bellali & Papadatou, 2006).…”

“…In the final phase, many bereaved parents experience personal growth by beginning to find meaning and purpose in their lives. They experience changes in themselves, their family lives and their social lives (Bellali & Papadatou, 2006;Meert, Thurston & Thomas, 2001, transform their lives and honor the memory of the deceased infant/child and/or join organizations whose goals are to help others (Armentrout, 2007). The proposed study focuses on the grieving experiences of bereaved parents as outlined by the grief phases depicted in the model.…”