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

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...

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Bibliographic Details
Published in:Qualitative health research 2020-04, Vol.30 (5), p.693-703
Main Authors: Coelho, Alexandra, de Brito, Maja, Teixeira, Pedro, Frade, Pedro, Barros, Luísa, Barbosa, António
Format: Article
Language:English
Subjects:
Anticipatory grief
Cancer
Caregivers
Caregiving
Emotional regulation
End of life decisions
Expectations
Grief
Health technology assessment
Life threatening
Palliative care
Patients
Psychological distress
Qualitative research
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Summary: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.
ISSN:1049-7323
1552-7557
DOI:10.1177/1049732319873330