More than chores: The invisible health work of family caregivers in rural New Brunswick, Canada.

Abstract

Most home care for people living with chronic illness or disability is provided by informal, or unpaid, family members. Family caregivers in rural New Brunswick engage in essential work to maintain the home as a site of care. Renovations, property maintenance, and the administrative work involved in accessing medical equipment and managing staff are examples of the types of invisible labour involved in interacting with a complex care environment. Conversations with 13 family caregivers across a small rural Canadian province suggest that even when resources are 'available', place-based factors involved in caring at home in a rural setting make it difficult for carers to use these resources and accessing them becomes another form of work itself. Similar to Wiles et al.'s (2018) findings in their study of end-of-life family care in Aotearoa, New Zealand, carers in rural New Brunswick spoke of their activities as part of an ongoing process of interaction with the care recipient and care environment. Carers with fewer financial and material resources experienced higher burdens of invisible work. The paper sheds light on the types of labour involved in 'knowing, doing, and negotiating' care at home and re-categorizes these activities as 'health work' as a means of informing home care policy. The paper finds that family caregivers are aware of their invisible work, characterize it as essential health work, and seek recognition for their complex contribution to the formal health system.