Worst-case scenarios, triggers, and coping strategies among head and neck cancer caregivers.

Abstract

e18097 Background: Head and neck cancers (HNCs) place a heavy burden on patients and informal caregivers (e.g., family, friends) involved in cancer care and recovery. As patients live longer with treatment advances, both patients and caregivers face uncertainty about the future, including fears of cancer progression and recurrence. These fears can lead to anxiety and depression, which can negatively affect their lives and patient care. Among patients, research has begun studying the role of worst-case scenarios (WCS) to inform intervention development; however, WCS have not been examined among cancer caregivers. This study presents data on cancer caregivers’ self-reported WCS, including their triggers, coping strategies, disclosure to others, perceived control, and time spent thinking of WCS. Methods: HNC caregivers provided written, open-ended responses on their WCS regarding their patient, WCS triggers, and coping strategies for managing WCS. Responses were coded into major, non-exclusive themes. Sharing of WCS, controllability, and time spent on their WCS were also quantified. Results: HNC caregivers (N=21) were 86% female, and the majority were spouses (mean age 57 ±16 years). The WCS themes most endorsed were cancer progression/future uncertainty (n=11 instances, 36%), death (n=6, 19%), suffering/deterioration (n=4, 13%), and well-being/mental health (n=4, 13%). Triggers of WCS were primarily patient illness and cancer side effects/symptoms (e.g., altered speech); some participants (29%) had no triggers. The most common coping strategies used to manage WCS were prayer and spirituality, staying positive, and avoidance. Most caregivers (81%) did not share their WCS with anyone, but of those who did (19%), most reported sharing with their patient. Most (76%) found their fears to be either completely or mostly controllable, whereas others (24%) found them to be moderately or somewhat controllable. Time spent thinking about WCS ranged from not thinking about it daily (n=12, 60%) to <5 min (n=3, 15%), 5-10 min (n=3, 15%), 10-30 min (n=1, 5%), and 1-2 hours (n=1, 5%). Conclusions: Overall, caregivers reported managing WCS with various coping strategies, and most reported that WCS were controllable, with little time spent thinking about them. Nonetheless, a small subset had greater difficulty managing WCS. Findings may guide the development of targeted support for those experiencing high distress due to WCS (e.g., exposure-based interventions).