Caregiver grief in terminal illness and bereavement: A mixed-methods study. By: Waldrop, Deborah P., Health & Social Work, 03607283, 20070801, Vol. 32, Issue 3
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. KEY WORDS: bereavement; caregiver grief; end-stage caregiving Chronic illnesses that become terminal bring losses for both ill people and their caregivers. Less attention has been focused on the losses entailed while caring for a chronically ill person than on those that occur after death. Advancing illness encompasses both physical loss, which occurs when something tangible becomes unavailable (for example, functional decline or dependence) and psychosocial loss, which results from changed social interactions (for example, the need for assistance with activities of daily living) (Rando, 2000). Losses begin with the onset of symptoms, such as decreased function and increased fatigue, continue as the symptoms of a progressive illness become more pronounced and intensify during the active dying process (Loscalzo & Brintzenhofeszoc, 1998). Losses continue to emerge long after the person dies. There is growing recognition that caregivers experience normal anticipatory grief while engaged in the caregiving process (Sanders & Saltz Corley, 2003). "Caregiver grief" has been described as the intellectual, affective, and existential elements of changing care demands and expectations (Meuser & Marwit, 2001). Because individuals' grief varies in intensity, duration, and form of expression, caregiver grief accompanying different illnesses is likely to involve distinct features and dynamics (Carr, House, Wortman, Neese. & Kessler, 2001). For example, the caregivers of people with dementia experience anticipatory grief and a long goodbye (Walker & Pomeroy, 1996). This article focuses on the situation-specific responses of caregivers of terminally ill people who died while receiving hospice care and aims to expand the knowledge base about caregiver grief in different illnesses. Hospice programs typically require that a person be diagnosed with an incurable illness that is expected to result in death within six months; many, although not all, have cancer (National Hospice and Palliative Care Organization, 2005). CONCEPTUALIZING RESPONSES TO ILLNESS, CAREGIVING, AND LOSS
The concepts of distress, grief, bereavement, and mourning are often used interchangeably in relation to psychosocial responses to a terminal illness. Distress has been used to distinguish and measure specific indicators such as depression and anxiety (psychological distress) and pain or nausea (physical distress) (Cameron, Franche, Cheung, & Stewart, 2002). The National Comprehensive Cancer Network (2003) has defined distress as "a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the...
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