Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study

Abstract

Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating, remembering, and getting things done. Following the death, caregiver grief became a state of sustained reactivity: Overall distress was diminished and anxiety and hostility decreased significantly, but loneliness, sadness, and tears increased. Overwhelming responses were triggered by unforeseen visual or auditory reminders of the person. Sleep disturbances began during end-stage care and continued after the death. At both times, caregiver grief was highly influenced by the social context; relationships with family and friends (more cohesive versus conflicted) shaped responses. Social work practitioners can help caregivers who may be unaware they are experiencing grief to identify and integrate these normal responses to loss.

Longitudinal Changes and Predictors of Caregiving Burden While Providing End-of-Life Care for Terminally Ill Cancer Patients

“…This result is the same as for Australian caregivers, 21 but in contrast to that for Canadian FCs. 7 However, as previously reported, 16,33 we found that the impact of EOL caregiving on Taiwanese FCs' schedule and health increased significantly as the terminally ill cancer patient's death came closer. As terminally ill cancer patients' physical condition deteriorates, 16 the caregiving impact on FCs' schedule obviously rises and the caregivers' physical health worsens and exhaustion appears.…”

Caregivers' Coping and Self-Forgiveness After the Death of a Care-Receiver

“…Rumination and seeking an understanding about causality are among non-adaptive coping behaviors that keep individuals stuck in the grief process (Lyubomirsky & Nolen-Hoeksema, 1993). Non-adaptive coping strategies also include feelings of despair, anger, loneliness, anxiety, sadness, crying, agitation, withdrawal, anxiousness, irritability, depression, numbness, shock, dissociation, sleep disturbance, decreased appetite, immune suppression leading to illness, decreased energy, somatic complaints, and exhaustion (American Psychological Association, 2000; Rando, 2000;Rosenzweig, Prigerson, Miller, & Reynolds, 1997;Silverberg, 2007;Stroebe, Hansson, Stroebe, & Schut, 2001;Waldrop, 2001).…”

Stress and Grief Among Family Caregivers of Older Adults With Cancer: A Multicultural Comparison From Hawai‘i

“…Anticipatory grief affects caregivers physically, emotionally, and cognitively (Kehl, 2005;Waldrop, 2007). The physical manifestations of anticipatory grief include loss of appetite, insomnia, and exhaustion.…”

“…Based on the continuing lack of resources available, stress continues to be a predominant emotional state that caregivers report experiencing while providing care (Anngela-Cole & Hilton, 2009;Savla et al, 2008;Waldrop, 2007).…”