A care ethical perspective on family caregiver burden and support.

Abstract

Family care-when partners, relatives, or other proxies care for each other in case of illness, disability, or frailty-is increasingly considered an important pillar for the sustainability of care systems. For many people, taking on a caring role is self-evident. Especially in a palliative care context, however, family care can be challenging. Witnessing caregivers' challenges may prompt compassionate nurses to undertake actions to reduce burden by adjusting tasks or activities. Using a care ethical approach, this theoretical paper aims to provide nurses with an alternative perspective on caregiver burden and support. Drawing on the concepts of relationality and contextuality, we explain that family care often is not a well-demarcated or actively chosen task. Instead, it is a practice of responding to an all-encompassing "call" to care flowing from a relationship, within a social and cultural context where norms, motivations, and expectations shape people's (sometimes limitless) care. We consider relational interdependence at the root of persisting in care provision. The question is then whether self-sacrifice is a problem that nurses should immediately solve. In ideal circumstances, self-sacrifice is the result of a conscious balancing act between values, but family care in the context of serious illness barely provides room for reflection. Yet, instant attempts to alleviate burden may overlook family caregivers' values and the inherent moral ambiguities and/or ambivalent feelings within family care. Family care is complex and highly personal, as is finding an adequate balance in fulfilling one's sometimes conflicting values, motivations, and social expectations. Therefore, we suggest that caregiver experiences should always be interpreted in an explorative dialogue, focused on what caring means to a particular family caregiver. Nurses do not have to liberate family caregivers from the situation but should support them in whatever overwhelms or drives them in standing-by their loved ones until the end.