WORK MADE (IN)VISIBLE: MAPPING INTERSECTIONS OF INFORMATION WORK AND CARE WORK

abstract

Abstract With government endorsement of aging in place, a growing reliance on family caregivers who provide unpaid care for aging family members prompts further investigation. Seeking, interpreting, creating, and sharing information (examples of information work) are one such facet of unpaid care. Information work saturates every facet of caregiving, providing tools for coping, problem solving, and dealing with uncertainty through knowledge, affirmation, and support. Data from three separate institutional ethnographic studies trace the degree to which family caregivers’ information work are made invisible or obscured in policy, scholarship, and by caregivers themselves. Findings from interviews with family caregivers of community-dwelling older adults living with dementia, analyses of aging in place policies, and a scoping review of caregiving literature collectively map out the social organization of informal caregivers’ information work. In each study, an institutional ethnographic approach is implemented, examining usages of language and power, organizational interests, and indications of unstated assumptions to uncover how families’ own discourses, policy documents, and academic thinking regulate understandings of caregivers’ information work. Findings from this study signify an innovative shift in the ways the complexities of searching for and using information on behalf of an aging family member are understood. Findings speak to the trend towards informatization of care, that is, how government and health care systems are using the provision of information to gradually marginalize care. Results of this study bring visibility to the concept of information work as a means to more responsively support the evolving information needs of family caregivers.