Abstract

BackgroundAdolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature.Methods and findingsThis analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13–21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant.” As loss significance increased, AeYAs were more likely to report that it had changed their life “a lot/enormously” (P<0.0001), that they were grieving “slowly or never got over it” (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018).ConclusionsMost AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.

Highlights

  • Adolescent loss due to death is surprisingly common; by the time they graduate from high school, most adolescents (71%) have experienced a loss, reporting a median of 2 deaths[1,2]

  • Peer or parental loss was associated with increased risk of negative mental health outcomes

  • Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness

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Summary

Introduction

Adolescent loss due to death is surprisingly common; by the time they graduate from high school, most adolescents (71%) have experienced a loss, reporting a median of 2 deaths[1,2]. Most bereavement research in pediatrics has focused on children who have experienced the death of a parent or sibling due to illness or trauma [3,4,5,6,7,8,9], but peer and grandparent deaths are the losses most frequently reported by adolescents and early young adults (AeYAs)[2]. The loss may be associated with depressive symptoms or increased rates of major depression, or it may produce high levels of death anxiety and intense grief[2,19]. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature

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