Family support for hospice caregivers

Abstract

This qualitative study investigated family supports for primary caregivers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.

The Caregiving Journey for Family Members of Relatives With Cancer

“…Hostile, paranoid, psychotic, and sullen behaviors; frequent expressions of anger; and unresolved conflict all contributed to the caregiver's increased risk of developing grief-related health complications. Grbich, Parker and Maddocks (2001); Palm and Friedrichsen (2008); and Patterson and Dorfman (2002) found that caregivers valued the opportunity to experience greater closeness with their partners during the palliative care stages. Direct communication, physical contact, laughter, effective problem solving, and spending time together all were identified as activities that strengthened the caregiver/patient relationship (Edwards & Clarke, 2004;Palm & Friedrichsen, 2008).…”

Caregiving for Older Latinos at End of Life

“…Many Latino family caregivers are forced to grapple with end-of-life issues and caregiving alongside generational group differences, 49 limited financial resources, and families that have been fragmented due to geographical distance and immigration laws. Therefore, the provision of additional support 50 and respite for caregivers is vital 51 in hospice care, as well as other settings providing care to terminally ill individuals. Family members could possibly be given visitation immigration status when entering the country for caregiving duties for family members at end of life, since the existing Family Leave Act is often not a viable option for lower income families.…”

“One Size Doesn’t Fit All”—Partners in Hospice Care, an Individualized Approach to Bereavement Intervention

“…This gap between abilities and demands, which can vary among individuals, given their unique situations and contexts, justifies tailored intervention strategies that improve skills such as mastering tasks of daily living, engaging in self-care behaviors, and functioning socially as a single or uncoupled person in society (Caserta et al., 2004; Stahl & Schulz, 2014; Utz, 2006). Thus, an individually delivered intervention is particularly relevant for those whose spouse/partner died after a terminal illness like cancer because they may be better helped by an approach that is tailored to their specific needs (Bergman & Haley, 2009; Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; Caserta et al., 2013; Patterson & Dorfman, 2002; Penson, Green, Chabner, & Lynch, 2002).…”