Date Published: August 23, 2017
Publisher: Public Library of Science
Author(s): Liza-Marie Johnson, Carlos Torres, April Sykes, Deborah V. Gibson, Justin N. Baker, Josefin Sveen.
Adolescents 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.
This 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). Most 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.
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 [3–9], but peer and grandparent deaths are the losses most frequently reported by adolescents and early young adults (AeYAs).
This was a cross-sectional study in which the primary objective was to describe the prevalence, types, and importance of loss experienced by AeYA patients with a diagnosis of malignant disease or severe hematologic disorder requiring treatment by allogeneic stem cell transplant (i.e., severe aplastic anemia), along with the sources of support used by these patients after experiencing loss. Eligible AeYAs were receiving active therapy (they were eligible after 6 months of therapy or after 3 months if experiencing progressive disease) or had completed therapy within the previous 3 years. As an exploratory objective, participants were screened for risk of depression, anxiety, or somatization to determine whether there was a relation with bereavement. This single-institution study was approved by the Institutional Review Board at St. Jude Children’s Research Hospital; written assent and parental consent were obtained from every study participant in accordance with the institutional protocol.
Of 161 AeYA patients invited to participate in the study, 153 (95%) were enrolled (Fig 1). The demographic and disease characteristics of the AeYA participants are listed in Table 1. Eighteen participants (12%) reported having experienced no losses, and 19 (12%) reported a pet loss as their only (n = 12, 7%) or most important loss. Multiple losses were common (being reported by 67% of participants), even when pet losses were excluded from the analysis (leaving 61% of participants having experienced multiple losses). The median number of losses was three per participant, with a range from one to eight. Excluding pet loss, the median number of losses fell to two per participant. The most common losses reported by AeYA oncology patients were a grandparent (58%), a friend (37%), a treasured pet (35%), or a second-degree relative (34%). Fifty-six participants (37%) reported a total of 95 friend (peer) losses, with 66% (n = 63) of these losses being cancer-related deaths. Table 2 shows the most important losses and their distribution across family relationships based on the level of loss importance.
Adolescent and early young adult patients with serious illness are likely to have experienced the loss of a family member or friend (n = 123, 80.4%). Not surprisingly, peer loss appears to be more common among these patients than in the general population of adolescents (being reported by 37% of patients versus 10.8% of the general population), and two-thirds of peer losses are cancer related. Furthermore, it appears that having experienced the loss of a parent or peer, in the context of a cancer diagnosis, is associated with an increased risk of negative psychological outcomes in this population. We were surprised to find no relation between sibling loss and negative psychological outcomes, but the small number of sibling losses in this study (n = 7) may be unrepresentative of sibling loss in general.
This study indicates that peer loss is more common for AeYAs than in the general population. Given that numerous studies have demonstrated the unique nature of peer loss, clinical assessments for loss and bereavement difficulties appear to be important in the population of AeYA patients with a serious illness such as cancer. Parental and peer loss is associated with the risk of negative mental health outcomes in AeYA patients with cancer and warrants further exploration. Longitudinal research on the grief and bereavement experiences of AeYAs with illness is urgently needed. Research on clinical interventions targeting grief in AeYAs with cancer would also be beneficial.