Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges

Abstract

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.

Health Care Professionals' Experiences With Preloss Care in Pediatrics: Goals, Strategies, Obstacles, and Facilitators

“…4,5,17 However, the importance of aiding parents in their coping with grief prior to their child's death is becoming more evident in research and in theories on loss and grief. 7,18,19 Theories emphasize that bereaved parents have to adjust to a 'new reality' where the child is physically absent. In order to make this transition parents have to cope with several conflicting emotions, to eventually adjust their plans and integrate the loss in their autobiographical memory.…”

“…In order to make this transition parents have to cope with several conflicting emotions, to eventually adjust their plans and integrate the loss in their autobiographical memory. 4,[20][21][22][23] An important aspect of this adjustment, that characterizes the process of bereavement, are two components of anticipatory grief; 7,24 preparedness and awareness time on the impending death. 25,26 Studies have shown that HCPs are able to positively influence parental preparedness by conducting end-of-life conversations, in which topics such as prognoses, future scenario's, and grief and loss are discussed.…”

“…4,5 However, studies show that feelings of grief are felt by parents from diagnosis, throughout illness progression, and persist beyond the child's death. 6,7 HCPs experience a growing responsibility to aid parents in coping with experienced losses and feelings of grief during the end-of-life period. 8,9 Engaging in preloss care during the end-of-life might improve parental bereavement outcomes following the loss of a child.…”

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

“…This anticipatory grief has been the focus of much research. Findings from a qualitative study suggest that this type of grief results in traumatic distress from the exposure to a family member’s closeness to death, and the losses resulting from anticipated separation [ 33 ]. These demands can result in intense emotions.…”

Anticipatory Grief among Chinese Family Caregivers of Patients with Advanced Cancer: A Cross-Sectional Study

“…[ 4 ] Research in AG has since expanded to encompass several social phenomena, albeit there are still only a few intervention studies focused on FCGs of patients with cancer. [ 3 5 6 ] The reason may be a lack of thorough understanding or consensus on the influencing factors of AG, focused on patients' disease-related and demographic factors. [ 7 8 9 10 11 12 13 14 15 ] Disease-related and demographic factors contribute to screening high-risk groups, but it is difficult to plan interventions which are conducive to improve AG.…”